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Dementia Prevention and Treatment : A Narrative Review

• 1 Multicampus Program in Geriatric Medicine and Gerontology, David Geffen School of Medicine, University of California, Los Angeles
• 2 Department of Neurology, Cedars-Sinai Medical Center, Los Angeles, California
• 3 Jona Goldrich Center for Alzheimer’s and Memory Disorders, Cedars-Sinai Medical Center, Los Angeles, California
• 4 Department of Psychiatry, University of Michigan, Ann Arbor
• 5 Center for Clinical Management Research, VA Ann Arbor Healthcare System, Ann Arbor, Michigan
• Viewpoint Longitudinal Management of Dementia in Primary Care Lauren R. Moo, MD JAMA Internal Medicine
• JAMA Internal Medicine Patient Page I Am Worried About Memory Loss—What Should I Know? Tamara G. Fong, MD, PhD; Stephanie S. Buss, MD JAMA Internal Medicine

Importance   Dementia affects 10% of those 65 years or older and 35% of those 90 years or older, often with profound cognitive, behavioral, and functional consequences. As the baby boomers and subsequent generations age, effective preventive and treatment strategies will assume increasing importance.

Observations   Preventive measures are aimed at modifiable risk factors, many of which have been identified. To date, no randomized clinical trial data conclusively confirm that interventions of any kind can prevent dementia. Nevertheless, addressing risk factors may have other health benefits and should be considered. Alzheimer disease can be treated with cholinesterase inhibitors, memantine, and antiamyloid immunomodulators, with the last modestly slowing cognitive and functional decline in people with mild cognitive impairment or mild dementia due to Alzheimer disease. Cholinesterase inhibitors and memantine may benefit persons with other types of dementia, including dementia with Lewy bodies, Parkinson disease dementia, vascular dementia, and dementia due to traumatic brain injury. Behavioral and psychological symptoms of dementia are best treated with nonpharmacologic management, including identifying and mitigating the underlying causes and individually tailored behavioral approaches. Psychotropic medications have minimal evidence of efficacy for treating these symptoms and are associated with increased mortality and clinically meaningful risks of falls and cognitive decline. Several emerging prevention and treatment strategies hold promise to improve dementia care in the future.

Conclusions and Relevance   Although current prevention and treatment approaches to dementia have been less than optimally successful, substantial investments in dementia research will undoubtedly provide new answers to reducing the burden of dementia worldwide.

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Reuben DB , Kremen S , Maust DT. Dementia Prevention and Treatment : A Narrative Review . JAMA Intern Med. 2024;184(5):563–572. doi:10.1001/jamainternmed.2023.8522

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• Published: 30 October 2019

Balancing the struggle to live with dementia: a systematic meta-synthesis of coping

• Guro Hanevold Bjørkløf 1 ,
• Anne-Sofie Helvik 1 , 2 ,
• Tanja Louise Ibsen 1 ,
• Elisabeth Wiken Telenius 1 ,
• Ellen Karine Grov 3 &
• Siren Eriksen   ORCID: orcid.org/0000-0002-5541-0934 1 , 4  

BMC Geriatrics volume  19 , Article number:  295 ( 2019 ) Cite this article

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People with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. They often have difficulties with orientation, loss of roll function, and fear about the future, and need help from others. An increasing body of literature also focuses on how people with dementia search for meaning and maintaining of quality to life, and how they find strategies to live with dementia. A review of the scientific literature on coping and dementia is warranted and can help to advice and inform healthcare personnel and decision makers on how they can support and plan for appropriate healthcare services for people with dementia. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding people with dementia’s experience of coping.

We conducted a systematic, computerised search of Medline, Embase, Cinahl Complete, PsycINFO and Age Line combining MeSH terms and text words for different types of dementia with different descriptions of experience. Studies comprised 1) a sample of people with dementia, 2) a qualitative interview as a research method and 3) a description of experiences of coping were included. The search resulted in 7129 articles, of which 163 were read in full text, 80 were excluded due to the exclusion criteria or low quality according. The analysis was conducted in line with qualitative content analyses.

This interpretative qualitative meta-synthesis included 74 articles of good quality encompassing interviews with 955 persons with dementia. The material revealed two main resources of coping: (1) Humour and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation A comprehensive understanding of the categories led to the latent theme: Balancing the struggle of living with dementia .

This meta-synthesis indicates that people with dementia cope in different ways and using several parallel strategies. This insight is essential in dementia care to facilitate a supportive environment.

Peer Review reports

Dementia is a common term for a chronic functional decline caused by disease or damage in the brain, where Alzheimer’s disease is the most common [ 1 , 2 ]. During progression of this decline the need for help from others are unavoidable and the focus moves from maintenance of daily functioning and activities in early phase towards comfort and well-being in late stage [ 3 ]. In the late, severe stage of dementia, the patients will be fully dependent on others and patients will eventually die [ 2 , 4 ]. According to Alzheimer’s Disease International [ 5 ], the World Health Organization [ 6 ] and the Norwegian Dementia Plan 2020 [ 7 ], dementia treatment and care need to be based on the values of person-centered care [ 8 ]. Thus, in providing the appropriate treatment and support in accordance to people with dementia’s own needs and fundamental human rights, knowledge about how people with dementia experience and cope with their current and future life-situation is fundamental.

To live with dementia is an idiosyncratic experience as dementia influence each individual differently. Thus, a person becoming ill with a dementia will in different ways become dependent on own and surrounding resources for coping as the illness progresses. The concept ‘coping’ refers to the struggle to overcome and manage the stress from adapting in life [ 9 ]. Coping strategies are defined as “cognitive and behavioural efforts to master, reduce, or tolerate the internal and/ or external demands that are created by the stressful transaction” (p.843) [ 10 ]. Folkman & Lazarus’ transactional perspective on coping highlights people and surrounding environment to be in an ongoing reciprocal relationship. Life-stressors are constantly being evaluated in a process of appraisals where perceptions of available internal and external resources (primary appraisals) affect choice of strategies used to cope with the situation (secondary appraisal) [ 11 ]. The strategies involve approaches aiming to alter the stressful situation (i.e. problem-focused coping strategies), as well as regulation of emotional distress associated with the situation (i.e. emotion-focused coping strategies) [ 11 , 12 ]. Thus, the strategies for coping depend on appraisals of the situational context and of personal factors; altogether constituting the individual’s available coping resources [ 11 , 13 ]. Normally, people alternate between problem- and emotional-focused coping strategies, but in more severe and acute stress the use of all available strategies is triggered in a global coping response [ 11 , 14 , 15 , 16 , 17 ]. A global coping response is defined as a response in acute and severe stress where you use: “combinations of almost all of the problem-focused and emotion-focused coping strategies, indicating the use of a substantial global coping response” ([ 17 ]p., 949).

During the last decade, a growing body of research has emerged that focus on how people experience and cope with dementia [ 18 , 19 , 20 ]. A review of the scientific literature on coping and dementia is therefore warranted and can help to advice and inform healthcare personnel, decision makers and informal carers on how they can support and plan for appropriate healthcare services for people with dementia.

An interpretative qualitative meta-synthesis was conducted [ 21 , 22 ]. The review includes cross-sectional and longitudinal qualitative interview-studies describing coping in different ways.

The methodology used for this meta-synthesis has also been used by some of the authors in previous published work [ 23 , 24 ]. We conducted a systematic search combining different words for dementia and experience. The search was conducted in five databases: Age Line, Cinahl Complete, Embase, Medline and PsycINFO. See Table  1 for an overview of the search strategy as a whole. The search was restricted to peer-reviewed qualitative research studies in English language published between January 2004 and June 2018. We identified 7129 articles, of which 163 qualified for inclusion. Details of the inclusion og exclusion process is described in flowchart, Fig.  1 .

Flow chart, literature search

To minimize the risk of mistakes and ensure consistency in quality, the screening of articles was performed by pairs of authors, in line with PRISMA standard [ 25 ]. Disagreements was resolved by discussions in the whole group. Potential articles were read in full text and included if: (1) the sample consisted of people with dementia only; (2) the research method was qualitative interview; (3) the voice of people with dementia was clearly described; and (4) the article included a description of experiences of coping. Articles were excluded if: (1) dementia was described as probable or possible; (2) there was a mixed sample with people with dementia and people with other diagnoses, and (3) the paper described experience from a specific intervention.

Assessment of the quality of the studies

Eighty-three of the articles were reviewed according to the CASP (Critical Appraisal Skills Programme) criteria for qualitative studies [ 26 ]. The quality of the studies was also assessed by pairs of authors. If disagreement that could not be resolved by discussion occurred, the group involved one of the other authors. We used the following nine criteria of the CASP: (1) a clear statement of aims; (2) appropriate choice of the method; (3) appropriate research design; (4) congruence between the recruitment strategy, aims and research; (5) the data collection method addresses the research issue; (6) a relationship between the researcher and the participant was considered; (7) ethical issues were considered; (8) the process of data analysis was sufficiently rigorous; and (9) a clear statement of the findings. Each criterion was given an equal weight (i.e., 1 point) for a maximum score of nine for each quality assessment per article. We considered a score of nine as high methodological quality and a score of 7–8 points was considered moderate quality (see Table  2 ). We included studies with a moderate or high quality. Nine studies were excluded due to low quality and scores below 7.

We included a total of 74 articles interviewing 995 people with dementia in the meta-synthesis. The studies are presented in Table  3 . Fifty-three of the articles emphasized on the participants’ ability to provide informed consent and verbally articulate their experiences, but only 21 described the participants’ stage of dementia or level of cognitive function. However, all studies provided information about participants’ housing situation and relocation to long-term care can serve as an indicator of dementia being in a moderate to severe stage. Among the included studies,13 studies interviewed participants living in nursing homes or other care facilities, 57 studies included participants living at home, and 4 studies had a mixed sample. Individual interviews constituted the main data and were described in 64 of the studies. Four studies were based on interviews with dyads or pairs consisting of person with dementia and health care personnel, and six studies were based on focus group interviews including people with dementia. Most studies conducted single interviews with the participants, but 17 studies were based on repeated interviews and of those, nine studies carried out interviews over a period of more than 2 months and can be characterized as longitudinal studies.

Data abstraction and synthesis

The abstraction and synthesis were conducted according to the principles of the interpretative synthesis [ 99 ]. We focused on the development of concepts based on the data from primary studies and further developed and specified theories that integrated the concepts [ 100 ]. The analysis built on the principles of qualitative content analyses [ 101 ] and comprised six steps: In the first step , pairs of authors (TLI, EKG, EWT and SE) read all the 74 papers. Results from the papers describing coping, were extracted as direct citations into “meaning units” (TLI and SE); a form created for further analysis [ 101 ]. In the second step , two of the authors (TLI and SE) condensed the meaning units. This is a process were the content of the direct citation is being extracted using the meaning unit’s own language. In the third step , two other authors (GHB and ASH) labelled the condensed meaning units with codes in order to organize the material. In the fourth step all authors compared codes and identified similarities and differences in order to structure and gathering the codes into subcategories. In the fifth step , the eight subcategories identified through this process were ultimately gathered into four categories with subcategories presenting the manifest meaning of the material. Finally, in the sixth step, the comprehensive understanding phase, we summarized and reflected upon the results consisting of resources and strategies, in order to reach a presentation of the text as one overall latent theme [ 101 ].

The 74 articles included in this meta-synthesis described challenges and sources of stress that people with dementia encounters. The studies reported experience of loss of autonomy, control and connection. The participants see themselves as “different” and no longer normal [ 32 ]. The memory problems, other symptoms of dementia and the unpredictable progression of the disease lead to worry and anxiety. The participants experience that their needs change; the need to be looked after and to be taken care of increases, and furthermore, new social and emotional needs arise [ 36 ]. The studies describe the experience of being stigmatized, feeling embarrassed or stupid. Dementia threatens the identity and sense of worth and changes their roles and the relationship to others [ 30 , 50 ]. The participants state that taking part in social events and meaningful activities become more difficult. Consequently, some feel that they lack competency and may not be contributing as much as they would like, for instance in household and society. Loss of social contact and meaningful activities lead to loneliness, isolation, emptiness or boredom and many people experience that it is necessary to adjust life expectations [ 50 , 89 ]. The decline in function and abilities have great impact on daily life and some express that life loses its purpose and that happiness is gone. The participants describe concerns for the future [ 82 ]. The progression of dementia, and thereby the future, is unpredictable.

Coping with dementia

The experience of challenges and stress forms the backdrop for the experience of coping and the coping strategies people with dementia use. It is interesting to note that only two of the 74 included studies explicitly aimed to explore coping [ 18 , 47 ].

The material emphasized two essential resources of coping that goes across the entire material: humour and social and emotional support . Humour is a personal resource that can be used actively to handle the symptoms of dementia. By laughing instead of crying, humour can be used as a safeguard in overwhelming situations. An ability to see the funny side can reduce stress, distract negative mood and elicit positive emotions. Social and emotional support are external resources of coping and describes the backing and practical help received from others; family, friends and other relations. Social support is important for coping with rising demands in life with dementia (See Table  4 ).

The analysis revealed four overall categories of coping strategies: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation (See Table  5 ):

Keep going and holding on to life as usual

This category relates to people with dementia continuing doing the same things they used to, taking 1 day at a time. They try to live their lives in the same way and hold on to the same activities as before they became ill. The underlying reason for this may be that they wish to do as much as they can before the progression of dementia reduces their abilities. The focus is on the present and to holding on to established routines and social relations. The category consists of the following subcategories: (a) Preserving identity ; (b) Normalising the situation ; and (c) Contributing to society .

Preserving identity refers to holding on to the identity that defines them as a person. They put effort into maintaining social roles and relations. They remind themselves and others of past achievements to preserve identity and self-esteem. By holding on to remaining aspects of themselves, they continue to live with the same sense of self as they have had for years.

Normalising the situation describes how people with dementia attempt to carry on with life and how they try to maintain a normal situation in daily life. It also refers to the effort they make to convince themselves and others that difficulties of memory loss or other challenges following dementia can be understood and explained as normal. They often compare themselves with others who forget things in order to normalise their own symptoms. By using this strategy, they seek to reduce their own worry and avoid negative response from surrounding people.

Contributing to society refers to the value of still being able to do meaningful activities and being useful. Many express a need or wish to use their remaining abilities and resources to help family or others for example by volunteer work.

Adapting and adjusting to the demands from the situation

This category of coping describes how people adapt and adjust by changing their own expectations towards themselves and activities they can perform. They seek information about dementia to be able to plan and prepare for the future. It also involves being active and doing changes in order to handle the situation. The category consists of the subcategories: (a) Taking control and compensating ; and (b) Reframing identity.

Taking control and compensating describes what the person does to continue being both physically and cognitively active. Additionally, in order to make life work despite their cognitive decline they find ways of doing things differently They emphasize that having regular routines, writing down important things and using technological aids are good tools to help them maintain function. The subcategory also relates to the willingness to ask for and accept practical help from others, decide who should know about the diagnosis, and stick to familiar routines and places.

Reframing identity refers to how the person build identity by thinking differently about themselves and comparing their lives to the lives of those who are worse off. They construct a new self-narrative as one more fortunate, which gives hope for the future and appreciation of life. Also, by being active in making decisions in life, they take responsibility for own personhood and autonomy.

Accepting the situation

This category includes acknowledgement of the situation and the diagnosis of dementia. It is an acceptance of memory loss and other symptoms of dementia and a recognition of what they can do for themselves and when assistance from others is needed. The person with dementia reconciles with life as it is, though it can be a resigned acceptance. This category consists of the subcategory position in life .

Position in life is about acknowledging the dementia diagnosis and the consequences of the disease and focusing on strengths and possibilities. Dementia is described as a challenge or a problem, not “the end of the world”. Some have lived through challenging situations earlier in life, either it is related to health or e.g. having lived through a war. The positive orientation can be understood as a desire of living well, not letting dementia take over their life and having hopes for the future regardless the prospect.

Avoiding the situation

People with dementia may experience challenging situations in which they feel unskilled or inadequate due to the cognitive decline. In addition, having a diagnosis of dementia and experience the condition develop can be stressful and threatening to the experience of security and sense of self. Coping by trying to avoid stressful situations could concern an active resistance to adaption, change or to accepting help because this may imply accepting dementia and the progression of the symptoms. The person with dementia can use strategies that actively redirects focus or refrain from the exposed situations. For instance, by changing subject in a conversation or avoiding situations by using distractions such as being active, keeping occupied or compensate. The focus is less on handling a “threat” that emerges, but more on keeping a distance and avoiding it in advance. This can include not thinking and talking about the future, withdrawal and not taking initiative because this could mean being exposed as cognitively impaired.

Balancing the struggle of living with dementia

The four categories of strategies presented in the material do not necessarily follow each other in a linear process of coping ending in acceptance of the situation. Instead, they should be seen as potential strategies when meeting challenges and stress following dementia. The participants reported using several strategies at the same time and they employed different strategies depending on appraisals of the demands from the situation they encountered. Hence, the choice of strategies will be influenced by not only available resources of coping, but also the situation and context, and several strategies can be used for the same situation and challenge. The coping process and the four strategies described by people with dementia can be summed up in the overall theme balancing the struggle of living with dementia .

The main findings from this study revealed two main resources of coping: (1) Humour; and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation. The coping process and the four strategies can be summarized in the theme; balancing the struggle of living with dementia.

The two studies in our data material explicitly exploring coping in people with dementia had different perspective. Frazer et al. [ 47 ] studied how women who live alone with dementia cope in their everyday lives. They found that their participants were actively engaged in re-constructing their sense of self, using a variety of coping strategies. Sharp [ 18 ] described how people with dementia cope with the stress they experienced. The author highlighted the topic of learning to do things differently and establishing coping strategies that provide control. Her participants described individual potential for adapting and coping with the stressful aspects of living with dementia. Even though the two papers do not present their interview guides, there are reasons to believe that the participants have been asked to describe their ways of coping.

However, most of the papers included in our study did not ask the participants explicitly about their coping strategies, all articles described different ways in which people with dementia cope with challenges in their daily lives. Coping strategies are responses to stress such as specific challenges and daily struggles. Our findings describe both problem- and emotion- focused coping strategies. A problem-focused strategy can be to do something yourself, but it can also mean letting others do something for you when the aim is to minimize the stressful situation. Emotion-focused strategies may relieve a person’s situation by creating distance to the challenges, for instance by avoiding confrontations regarding symptoms and thereby shielding themselves from the stressful situation. The papers included in our study describe that people with dementia often use several strategies simultaneously. This is in line with the literature which report that more severe and acute stress situations demand the use of all available strategies and that people alternate between different strategies [ 11 , 14 , 15 , 16 ]. Several papers convey how people with dementia keep going despite the rising challenges they meet due to progression of their cognitive and functional decline. In the early phase of the condition, many people have a strong will to continue living life as normal. This might be possible if one manages to mobilise available internal and external resources when approaching the specific situations [ 11 ]. Humour can be an effective coping strategy for making a threatening situation more harmless and thereby reducing stress. The experienced threats can vaporize if the person is able to make a joke and cover up the graveness of the situation. Through humour, the rational and sometimes harsh world can be kept stable as well as more tolerable [ 102 ]. Our study also showed that practical and emotional support are important coping resources for people with dementia. The findings are supported by a meta-synthesis of Eriksen et al. emphasising supportive interactions by family and friends as essential [ 23 ]. Supportive interactions enable people with dementia to prolong function and control in daily life, even though the areas of functioning gradually are becoming smaller. When symptoms increase and obstacles appear, our study gives the impression that most people with dementia fight the challenges. This is in line with a meta-synthesis conducted by Wolverson et al. [ 20 ] comprising the strengths that people can utilize in facing and fighting dementia, even leading to an experience of personal growth. Overall, fighting to keep going and overcome the daily struggles are signs of a problem-focused coping approach in people with dementia.

As the dementia condition progresses, and cognition as a personal coping resource declines, fighting the challenges will be more and more difficult. The person might experience that the ability to meet the situation changes and must therefore redefine what is important to him/her. Transformation in terms of new orientation and change of values (i.e. in relation to what is important in life), can be explained as response shift as described by Schwartz & Sprangers [ 103 ]. By «letting go» people with dementia can make a psychological shift from trying to change the unchangeable to acceptance and thereby deal with the decline [ 104 ]. People with dementia adapt by adjusting and compensating for their losses and challenges by selecting other goals or fewer domains in which to optimize their efforts and thereby sustain identity, function, and autonomy [ 105 , 106 ]. In this process, emotion-focused strategies can help the person to adapt, reorient and regain balance. When balance is re-established, it may be relevant to use problem-focused strategies again.

Some of the studies refer to people with dementia expressing what they actually manage to do, despite their symptoms of decline. This can be seen as a particular way of understanding how values have been redefined. A recent meta synthesis showed that as the condition progresses, the lived space is narrowed for people with dementia. Førsund et al. [ 24 ] describe this process through the metaphor of the Russian “babushka doll,” which is a set of dolls of decreasing sizes that all fit inside one another one by one. Step- by- step, the person with dementia faces new challenges in how to cope.

People with dementia experience many challenges and a lot of stress. When life changes and the condition progresses, finding ways to cope is essential for making everyday life work and solve practical tasks. However, coping is also about finding ways to continue being oneself and to experience meaning and autonomy [ 11 ]. Thus, knowledge about coping resources and strategies in people with dementia is essential in dementia care. This insight is highly relevant to health care personnel whose role it is to help facilitate a supportive environment for the person with dementia. However, the information is also highly relevant for informal carers. They may support the person’s functioning by helping to facilitate and coordinate everyday living, but also by giving emotional and practical support. Though being able to do the things they still manage to do, perceptions of control continue to be a personal resource and may prevent experiences of helplessness and hopelessness, anxiety and depression [ 107 ].

Limitations and strengths

We performed a systematic meta-synthesis and a transparent description of the selection process for the included articles have been presented. However, we acknowledge that a complete overview is not attainable, despite our approaches. The value of both individual reviewers and the use of pairs of researchers to evaluate the studies should be accredited.

The CASP criteria for qualitative studies consist of ten questions in which we have chosen to the first nine. These nine criteria assess the quality of the structure and the objective elements of the articles. The last and 10th question has not been considered as this is a subjective appraisal of the value of the research and the particular article as a whole. The10th question can be seen as important for the external validity of single study as a whole. This said, in our review we used parts of the articles describing the experience of coping and we re-analyzed and synthesized the material. A broader description of context could have strengthened the review.

Only nine of 74 studies included in this meta-synthesis had a longitudinal design. Therefore, it was not possible to describe if - or how - coping strategies change over time due to progression of the dementia. Further research is recommended to use longitudinal design and explore to what degree the patients at different stages of the dementia trajectory, use either problem-focused and/or emotional- focused coping strategies.

Conclusions

People with dementia experience stress during the dementia trajectory and it is essential to find ways to cope in order to make everyday life work and to continue being oneself and experience meaning and autonomy. Thus, knowledge about coping resources and strategies in people with dementia is essential in dementia care. The insight is highly relevant to health care personnel and next of kin whose role it is to help facilitate a supportive environment for the person with dementia. This systematic meta-synthesis shows that people with dementia cope in different ways and use several parallel strategies in order to meet the challenges they face. The comprehensive meaning is understood as: Balancing the struggle to live with dementia.

Further research should reconsider using a longitudinal design and explore coping strategies in different stages of the dementia trajectory. It is also interesting to explore the influence of coping resources like humour and social and emotional support on coping strategies and capabilities of people with dementia. Last, but not least it is important to explore the success of coping strategies in order to support these strategies in people with dementia.

Availability of data and materials

All the articles included in this meta-synthesis are presented and accessible. The datasets used and analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Anne Sofie Helvik

Critical appraisal skills programme

Ellen Karine Grov

Elisabeth Wiken Telenius

Guro Hanevold Bjørkløf

Siren Eriksen

Tanja Louise Ibsen

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Acknowledgements

We would like to thank university librarians Marit Gjone Sandsleth (University of South-east Norway) and Katarina Einarsen Enne and Vigdis Knutsen (Norwegian Advisory Unit on Aging and health) for providing essential help and advice for the computer-aided search.

The study, including systematic literature search, assessment of the quality of the studies, analysis, and interpretation of data; and writing the manuscript was all funded by the Norwegian Directorate of Health. However, the funding organization has not been involved in design, conducting the study or interpretation of results.

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All authors, GHB, ASH, TLI, EWT, EKG and SE, critically reviewed and analyzed the data. All the authors explored approximately one third of the potential articles and conducted the quality assessment of the articles and extracted the meaning units. TLI and SE further condensed the meaning units. ASH and GHB organized the material and labelled the meaning units with codes in order to organize the material. All authors compared codes, identified similarities and differences, and structured the codes into subcategories and categories. All authors were included in summarizing the text as one overall latent theme. SE and GBH wrote the article in cooperation with the other authors. All authors have read and approved the final manuscript.

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Bjørkløf, G.H., Helvik, AS., Ibsen, T.L. et al. Balancing the struggle to live with dementia: a systematic meta-synthesis of coping. BMC Geriatr 19 , 295 (2019). https://doi.org/10.1186/s12877-019-1306-9

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Partners in progress: Advancing dementia research through collaboration

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• 1 Professionals with Alzheimer's and related diseases (PALZ), Australia.
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The lived experience of dementia, the views of the caregiver, and the pursuit of scientific understanding by researchers need to converge for holistic and collaborative action to improve dementia research. However, there often exist silos and division between these groups, which limits relevance and innovation. This paper aims to bridge this divide by offering a tripartite exploration of dementia research through three distinct, yet interconnected, lenses of a person living with the disease, their dedicated carer, and a researcher actively engaged in dementia research. This collaborative endeavour highlights the need to move beyond the traditional (and outdated) dichotomy of "subject and expert". By weaving together personal perspectives and insights in a multi-voiced approach, we highlight the opportunities and potential that can emerge from working in partnership and using a relational approach.

Keywords: dementia; inclusion; relational; relationships; research partnerships.

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Decentralized Clinical Trials for Medications To Reduce the Risk of Dementia: Consensus Report and Guidance

This article describes recommendations for the conduct of remote medication trials for dementia prevention. The recommendations were crafted by an expert panel and refined by a working group of dementia researchers and clinicians. The article contains 40 recommendations for this trial type, including guidelines for safety, dispensing, outcome assessment, and data collection. 

Howard L, et al. Decentralized clinical trials for medications to reduce the risk of dementia: Consensus report and guidance . Alzheimer’s & Dementia . 2024;20(7):4625-4634. doi: 10.1002/alz.13891.

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Article Contents

Introduction, conclusions, declaration of conflicts of interest:, declaration of sources of funding:.

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Medication management information priorities of people living with dementia and their carers: a scoping review

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Alexander J Clough, Danijela Gnjidic, Amanda J Cross, Natali Jokanovic, Karen Watson, Jacqueline Wesson, Stephanie Beshara, Justin Cheng, Mouna J Sawan, Medication management information priorities of people living with dementia and their carers: a scoping review, Age and Ageing , Volume 53, Issue 9, September 2024, afae200, https://doi.org/10.1093/ageing/afae200

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People living with dementia and their carers often experience difficulties in effectively managing medications and have indicated they lack necessary support, information and guidance. Recognising the medication management information needs of this population is an important first step in addressing these issues.

To identify the priorities for information on medication management expressed by people living with dementia and their carers.

A scoping review with systematic search was conducted from inception to 12 May 2023 for any original studies that reported the information needs of people living with dementia and their carers (informal, i.e. unpaid or within an existing relationship) regarding medication management. Two authors independently screened the abstracts, full-texts and extracted data. Study characteristics were described descriptively, and themes of information need were extracted using an iterative approach.

Of the 11 367 records screened, 35 full-texts were included. All studies (n = 35) involved carers, with 17 also including people living with dementia. Most studies (n = 30) were conducted in the community and used qualitative methods (n = 32). Five major themes of information need were identified: critical medication information; medication effects; medication indication(s); disease progression and impact on medications; and safe and appropriate administration of medications. People living with dementia and their carers indicated they need more medication management information generally and want it simple, tailored and relevant.

This review highlights the key medication information priorities for people living with dementia and their carers and will help guide the provision of medication management guidance and development of new information resources.

First review identifying the medication management information needs reported by people living with dementia and their carers.

More information is required on medication indications, effects, duration, ideal administration, and rationales for ongoing use.

People living with dementia and their carers should be involved in discussions about their medications to promote safe use.

People living with dementia have more comorbidities than people without dementia leading to higher rates of medication use, including potentially inappropriate medications and polypharmacy [ 1 , 2 ]. These patterns of medication use can make managing these medication regimens very challenging, resulting in higher stress and burden for people living with dementia and their carers [ 3 , 4 ]. These factors, alongside cognitive decline related to dementia, impede the ability of people living with dementia and their carers to perform medication management, increasing the risk of medication-related adverse events [ 5 ]. Medication management encompasses any one of the following activities: selecting, supplying, preparing, administering, recording, monitoring and reviewing medications; and is a continual process from the initial prescribing of a medication through to ongoing management and review [ 6 ]. People living with dementia commonly manage their own medications in the early stages of dementia before their carers take a more prominent role as the disease progresses [ 7 ]. Carers have reported their involvement in every medication management activity, most commonly in administering, selecting, ordering and collecting medications [ 8 ].

Both people living with dementia and their carers have expressed unique difficulties with these activities, with people living with dementia often viewed as passive recipients of care and unable to manage their own health [ 9 ]. Combatting this by improving the self-efficacy of people living with dementia in caring for themselves has demonstrated increases in quality of life [ 7 , 10 ]. Additionally, evidence-based interventions that educate both the person living with dementia and their carer, and using person-centred care have improved transitions of care [ 11 ]. Empowering and educating people living with dementia and their carers about medications can thus help with medication management and improve health outcomes, with carers reporting increased confidence and satisfaction when receiving better-perceived and understandable guidance [ 12 ].

While there are informational materials available, a recent scoping review and environmental scan found that no current resources provide guidance on all aspects of medication management that are readable, practical and co-developed with people living with dementia and their carers [ 13 ]. Additionally, although the care needs of older adults in general have been explored regarding medication management at transitions of care, previous reviews have not explored the perspectives of people living with dementia [ 14 ]. Successful interventions depend upon a strong evidence base that considers the experiences and views of people receiving care, in this case people living with dementia and their carers [ 11 ]. To address this gap, the aim of this scoping review is to identify the priorities for medication management information expressed by people living with dementia and carers in published studies.

This scoping review was developed following the Joanna Briggs Institute (JBI) methodology for scoping reviews [ 15 ] and the protocol was registered on Open Science Framework ( https://osf.io/7xdmc ). The Preferred Reporting Items for Systematic Review and Meta-Analysis extension for scoping reviews (PRISMA-ScR) was followed (see Appendix 1 in the Supplementary Data for the checklist) [ 16 ].

Search strategy

The search strategy was modified from a previous scoping review that explored the experiences, priorities and perceptions of carers of people living with dementia in residential aged care facilities (RACFs) by removing terms related to RACFs and including terms related to medications and health information [ 17 ]. A University of Sydney librarian was consulted on the search strategy before running the final search. A systematic search was then conducted in seven electronic databases (Medline [Ovid], Embase [Ovid], Cochrane Library [Wiley], PsycINFO [Ovid], Web of Science [Clarivate], CINAHL [Ebsco] and Ageline [Ebsco]) from inception up to 12 May 2023. Key search terms were related to ‘dementia’, ‘identifying priorities’, ‘information’ and ‘medications’. The search strategy, including all identified keywords and index terms, was adapted for each included database (see Appendix 2 in the Supplementary data for the search strategy in Medline).

Identified studies were exported to EndNote (EndNote X9, Berkley, California, United States of America) and Covidence systematic review software (Veritas Health Innovation, Melbourne, Australia) and duplicates removed in Covidence.

Study eligibility

Included studies described the medication management information needs reported only by people living with dementia and/or carers of people living with dementia. All types of dementia, study setting and design and medications and medication regimes were considered. For this review, carers were defined as informal (unpaid) carers or carers who provided care within the context of an existing relationship (e.g. family or friend) [ 18 ]. Studies were excluded if the information needs were reported by any other population (such as healthcare professionals), or the information needs did not relate to medication management. Studies were also excluded if no full-text was available, they were not in English, and if they were reviews or not original studies.

Study screening and selection

Two authors independently screened the titles and abstracts, and full-texts of all identified studies (two of: AJCl, AJCr, NJ, KW, JW, SB, JC, MJS). Discrepancies were resolved by a third author (DG). Forwards and backwards citation tracking was used to identify any additional studies.

Data extraction

Data extraction for each study was completed by two authors independently (AJCl and AJCr, NJ, KW, JW, SB, JC or MJS). Study characteristics, methods and aims and focus regarding medications (general, a specific class or medication, or pattern of medication use) and data on the specific aspects of medication management reported were extracted. Pertinent quotes reported in the studies were identified and extracted.

The identified information needs, and experiences with medication management, as they relate to the four dimensions of health information processing defined by Sørensen et al. were also extracted [ 19 ]. These four dimensions are the ability of someone to: (i) access medication management information; (ii) understand medication management information; (iii) interpret and evaluate medication management information; and (iv) make informed decisions on medications and comply with medication advice. This was so the identified needs could be described according to how people living with dementia and their carers genuinely use information.

Analysis and presentation of results

The data on study characteristics and the aspect(s) of medication management reported in each study were described descriptively and tabulated to identify the most commonly identified areas of need. The content analysis of medication management information needs was performed using an iterative approach. The information needs were first listed verbatim as reported in the studies and then sorted into the aspect of medication management they aligned with. Codes were then developed from the results based on content (specific need and quotes) and who reported the need (people living with dementia and/or their carers). The codes were refined by comparing the similarities and differences between codes and emerging themes were extracted relating to the medication management information reported.

Two authors (AJCl and MJS) independently coded the extracted data and compared interpretations to ensure reliability. Theme development was discussed at project team meetings and iteratively refined based on group consensus. The themes were finally sorted according to how many studies reported those themes.

The extracted information needs defined by Sørensen et al. were next classified according to how people living with dementia and their carers accessed, understood, interpreted and actioned medication management information [ 19 ]. The dimensions were also used to explore what people living with dementia and their carers found both helpful and challenging when receiving and using medication management information.

Search results

After duplicate removal, 11 516 titles and abstracts of studies were screened, 149 full-texts were assessed for eligibility and 35 studies were included in the final analysis (see Appendix 3 in the Supplementary Data for the PRISMA flowchart) [ 20–54 ]. The main reasons for study exclusion were the studies: not reporting medication management information needs (n = 49); no full-text available (n = 38); and not being original studies (n = 18).

The full characteristics of included studies and aspects of medication management reported are described in Table 1 . Most studies were conducted in the community (n = 30), with four studies also recruiting people living with dementia who resided in RACFs. Most studies (n = 23) used qualitative semi-structured interviews to explore the information priorities and six studies used focus groups. All studies recruited carers, with 17 studies also recruiting people living with dementia. The most reported aspects of medication management needs were selecting (n = 21), monitoring (n = 18) and reviewing (n = 15) medications ( Fig. 1 ). Most studies explored medication management of all prescribed medications (n = 29), with three studies focussing on specific drug classes (antipsychotics, [n = 2] and dementia-specific [n = 1]) and the remaining three on other patterns of medication use.

Characteristics of identified studies

Aspects of medication management reported: selection a , supplying b , preparation c , administration d , recording e , monitoring f , reviewing g

UK: United Kingdom; USA: United States of America; RACF: Residential aged care facilities

*Same population as El-Saifi, 2019 [ 30 ] **Six focus group participants, no breakdown given of number of people with dementia and carers .

Number of studies reporting information needs reported by people living with dementia and their carers by aspect of medication management.

Medication management information priorities

Five main themes, reported in 25% or more studies, were identified as priorities for medication management information and are discussed below according to the frequency of studies reporting each theme.

Critical medication information (n = 23 studies, 65.7%)

The most reported area of information need was related to critical medication information, which was often described as lacking, missing, or not useful [ 20 , 22–25 , 30–32 , 35 , 36 , 38–41 , 43–45 , 47 , 48 , 50 , 51 , 53 , 54 ]. The critical medication information is derived from Australian standards of required information on medication product labels and recommendations to healthcare professionals regarding information provision to patients [ 55 , 56 ]. It encompasses: active ingredients [ 50 ]; medication purpose and warnings [ 39 , 40 , 43 , 44 ]; directions for use [ 22–25 , 30 , 31 , 36 , 41 , 44 , 47 , 54 ]; and the availability of medication options and formulations [ 20 , 30 , 32 , 35 , 38 , 45 , 48 , 51 , 53 ]. As an example, due to allergies, before accepting any new medication a person living with dementia always had to ask ‘how many are there with penicillin in them’ [While, et al., page 739 [ 50 ]].

The effects of the medications (n = 17 studies, 48.6%)

Next, it was reported there was not enough information on the effects of medications, both in terms of intended benefits and side-effects [ 20–22 , 26–28 , 30–32 , 36 , 39 , 40 , 43 , 44 , 47 , 50 , 54 ]. Carers drew particular attention to the need for information on the side-effects of sedating medications and antipsychotics, knowing that these medications came with certain risks but not exactly what they were and how they could be managed [ 21 , 28 ].

“It helps calm them down where they’re not frightened and they’re tolerable, but what’s it doing to them physically? You know, is it taking away from their life?”

[carer in Amstrong, et al., page 6 [ 21 ]].

Furthermore, carers wanted information on newly prescribed medications and dementia-specific medications and expressed uncertainty on the effects of these medications, partly because it was not always clear what would have happened if they were not taken [ 39 , 47 , 54 ].

‘The consultant told me that memantine would slow the dementia down … it is difficult to say whether it has slowed it down or not because I can’t tell what the dementia would be like if he wasn’t taking it, you know.’

[carer in McCloskey, et al., page 1118 [ 39 ]].

Carers suggested that a checklist with information on the known intended effects and side-effects could assist them in monitoring the medications [ 40 ].

Why the medication has been prescribed (n = 14 studies, 40.0%)

People living with dementia and their carers frequently reported they do not receive information on the indication(s) for each medication [ 20 , 22 , 24 , 28 , 30–32 , 35 , 36 , 43 , 44 , 47 , 50 ]. As demonstrated by one person living with dementia: “All I know is they are all tablets… I don’t know what they’re for” [Barry, et al., page 887 [ 24 ]].

In cases where information was provided, it was reported that the information was either insufficient and too generic to be useful, or too complex to be fully understood [ 30 ]. Complexity was especially common in written information, where medication information sheets and leaflets were too lengthy and information-dense [ 31 ].

‘Now that’s one of the difficulties with some medication information packages that you get … they are so long because they are so complex and written in technical terminology, most carers won’t read them…’.

[carer in El-Saifi, et al. (2021), page 467 [ 31 ]].

Some carers were concerned that because the person living with dementia did not know what each medication was for, they would selectively take only those they believed to be providing benefit [ 32 ].

Disease progression and ongoing appropriateness of medications (n = 14 studies, 40.0%)

It was further reported that more information is needed on how the progression of dementia could potentially impact the long-term appropriateness of medications and how to seek assistance on the ongoing management of medications [ 20 , 21 , 23 , 26 , 28 , 31–35 , 37 , 40 , 43 , 44 ]. Carers reported they wanted to know the impact of medications on the person they cared for at different stages of the condition to distinguish whether any symptoms or behaviour changes may be due to overprescribing, under-prescribing, the actual condition or something else entirely [ 21 , 23 , 28 , 32 , 35 ].

‘It’s also hard to know at each step, is it happening because of the disease or is she medicated?... Is it being so relaxed that you haven’t got control of your bowels or is it the disease? I don’t know.’

[carer in De Bellis, et al., page 27 [ 28 ]].

Four studies reported that people living with dementia and their carers had concerns with the medication regimen due to either the number of medications, or a particular prescription, but did not have enough information to ask for a medication review or approach the topic of deprescribing [ 31 , 33 , 37 , 43 ]. They proposed using educational materials to prompt these conversations as:

‘It helps people bring up the subject if they don’t know how.’

[person living with dementia in Green, et al., page 3559 [ 33 ]].

Safe and appropriate administration of medications (n = 13 studies, 37.1%)

Finally, people living with dementia and their carers reported they needed more information on how to safely and appropriately administer medications [ 20 , 22 , 30–32 , 34 , 37 , 40 , 41 , 43 , 46 , 50 ]. This was a theme mostly reported by carers, encompassing timing and method of administration [ 20 , 22 , 30–32 , 34 , 37 , 40 , 41 , 43 , 46 ]; providing clear information to the person living with dementia to aid acceptance of medications [ 20 , 31 , 40 , 43 , 50 ]; and managing direct administration concerns such as refusal and swallowing difficulties [ 20 , 31 , 32 , 40 , 43 ]. People living with dementia also reported wanting information on how to safely take their medications [ 43 , 50 ].

Carers commented that being able to explain why a medication had been prescribed and giving clear instructions for usage helped reduce refusal [ 20 , 31 , 40 , 50 ]. However, carers also remarked that guidance was not always applicable to their situation and not address the realities and difficulties in administering medications, such as knowing if and when eye drops had been taken [ 40 ].

‘Don’t forget that the clinician and pharmacist can have little or no understanding of the practicalities [of administering medications].’

[carer in Poland, et al., page 3 [ 40 ]].

Additional identified themes not discussed above are presented in Fig. 2 and classified according to the aspect of medication management each theme corresponds to.

Common themes of medication management information needs identified by people living with dementia and their carers by aspect of medication management.

Processing medication management information

Described below are people living with dementia and their carers’ common experiences with receiving and using health information within Sørensen’s four dimensions of health information processing. A summary of the enablers and challenges reported by people living with dementia and their carers of these different dimensions are described in Table 2 .

Enablers and barriers in processing medication management information experienced by people living with dementia and their carers

Accessing medication information

People living with dementia and their carers wanted and expected, to access medication management information directly from healthcare professionals stating they placed great trust in them [ 20 , 24 , 30–32 , 35 , 39 , 44 , 48 , 50 ]. However, it was commonly reported that healthcare professionals did not always provide this information, and, if they did, it was insubstantial, lacking relevancy and resulted in recipients having to source their own information [ 20 , 31 , 35 , 38 , 39 , 44 , 54 ]. This mostly came from internet searches [ 31 , 38 , 44 , 54 ] and printed sources [ 44 , 54 ] that may be inaccurate or misleading, such treatment duration varying between online suggestions and prescriber recommendations [ 44 ]. Additional medication management information was accessed from: patient information sheets [ 24 , 44 , 50 ], direct-to-consumer educational brochures [ 33 , 44 ], factsheets from dementia organisations [ 28 , 48 , 54 ], support groups [ 28 , 30 , 32 , 35 , 44 ], family members [ 36 ], other healthcare professionals [ 44 , 47 ], conferences [ 28 , 35 ] and internet-based resources [ 24 , 28 , 30–32 , 35 , 38 , 41 , 44 , 47 , 48 , 54 ].

Understanding medication information

Many people indicated that written information, while useful, was often difficult to fully understand due to its length and complexity [ 30 , 31 , 40 , 44 ]. Thus, it was appreciated when healthcare professionals took the time to not only explain the information they were giving, but also go through written information otherwise accessed [ 26 , 34 , 43 , 52 ]. This was considered especially important when there were cultural and religious factors that may affect medication use [ 20 , 37 ]. Sometimes, carers had to seek healthcare professionals who spoke their language, even if it delayed care [ 32 ]. Dose administration aids were commonly used but limitations were noted regarding their practicality for use in this population, such as Webster-paks having small font size [ 30 ].

Interpreting medication information

Frustration at the lack of opportunities and resources to fully interpret and evaluate the medication management information received from healthcare professionals was reported as an issue [ 26 , 30 , 31 , 35 , 47 , 54 ]. People living with dementia and their carers suggested a person-to-person approach providing brief, tailored information as the need arises would be more useful and allow for informed choices to be made [ 43 ]. Carers recommended written resources, such as checklists, that could contain key, simple information on medications and assume a certain prior knowledge of the healthcare system [ 40 , 52 ]. Reputable sources, including the Mayo clinic and dementia websites, were considered valuable by those conducting their own searches, and people living with dementia and their carers commonly triangulated the information to satisfy their requirements [ 34 , 35 ].

Actioning medication information

Confidence and the ability to employ useful medication management strategies such as implementing dosing schedules increased in line with experience but, importantly, it also rose when people living with dementia and their carers were involved in shared decision-making [ 28 , 35 ]. However, when information was not fully given, or carers were not afforded the opportunity to participate in shared decision-making, problems arose [ 40 ]. This sometimes resulted in medication decisions being made without expert advice, such as carers making up their own medications lists, increasing the potential for errors and carer burden [ 40 , 44 ]. Medication reviews were also seen as great facilitators in improving medication management [ 31 , 32 ].

To our knowledge, this is the first review of medication management information needs and priorities of people living with dementia and their carers, involving 35 studies with 378 people living with dementia and 1757 carers. It was reported that more information was required on every aspect of medication management to ensure the safe and appropriate use of medications. The priorities for information need related to critical medical information, the reasons for and effects of medications, impact of dementia progression on the use of medications, and safe and appropriate administration of medications. People living with dementia and their carers wanted clear, concise and relevant information and to be more involved in medication decisions. This review identified that people living with dementia and their carers are provided limited and inadequate information to manage medications.

Healthcare professionals were seen as both significant supporters for people living with dementia and their carers but also imposing barriers for receiving, understanding and putting medication management information into action [ 35 ]. These findings align with other studies, where people living with dementia and their carers expressed dissatisfaction with the communication from healthcare professionals [ 17 , 57 ], perceiving it as disjointed and not meeting their needs [ 13 , 58 ]. Transitions of care were described as particularly challenging periods for managing medications, primarily due to fragmented care and a lack of consideration for the impact of dementia on medication management [ 29 , 44 ]. From a carer perspective, this exacerbates their stress and burden which worsens their health and can subsequently negatively impact the person they are caring for [ 59 ]. Current planning misses these unique challenges and does not address the realities, such as the importance of the carer and managing changed behaviour during goals of care discussions [ 11 ]. Indeed, a previous review of successful care transition interventions for medication continuity among older adults did not describe what impact any level of cognitive impairment would have upon the ‘success’ of care transitions [ 14 ]. Proposed solutions could include incorporating a multidisciplinary team as part of in-hospital care for people living with dementia, such as involving pharmacists and pharmacologists in physician rounds to detect potential medication issues and propose interventions acceptable to patients, carers and prescribers [ 60 , 61 ]. Fundamentally, prioritising person-centred care, involving the person living with dementia and their carer in medication-related decisions while considering their acquired experience and knowledge, and having coordinated, responsive and tailored care can help address medication management challenges [ 11 , 35 , 43 , 52 , 62 ].

Not only is emphasising patient-centred care preferable to people living with dementia and their carers [ 63 , 64 ], but it has also demonstrated improved health outcomes [ 65 ]. Carers specifically highlighted the benefit of one-on-one meetings with a healthcare professional in which information was briefly and simply explained and repeated to ensure full understanding [ 30 , 31 , 37 ]. This verbal communication should be combined with accurate and understandable written information, due to both people living with dementia and their carers’ needs [ 26 , 40 ], and because of the frequent use and reliance of written information [ 58 ]. Developing these materials requires a collaborative approach between people living with dementia, carers, healthcare professionals and researchers that emphasises experience-gathering and co-design at every stage of resource development [ 66 ]. While previous reviews have explored the issues related medication management experienced by people living with dementia and their carers, and examined the available resources to assist this, none identified what the specific needs are [ 13 , 67 ]. This review adds to the evidence by identifying the information needs of people living with dementia and their carers regarding medication management so these can be addressed in any future resource development.

Further work is required to directly confirm the information gaps identified in this review with people living with dementia, carers and healthcare professionals and explore the priorities for medication management information across care settings that have not been captured in this scoping review. The identified priorities can be used as foundations for the development of co-designed medication management tools that address the unique needs of people living with dementia and carers.

Strengths and limitations

This review has several strengths. First, several databases were searched to identify studies reporting medication management information needs of people living with dementia and their carers. Second, data integrity was assured with two authors reviewing and extracting data for each study. Third, reference list checking and citation tracking ensured any studies missed through initial searches were captured.

This review does have one major limitation, however. Although the number of studies reporting each information need was extracted, the ordered priorities and how many people within each study reported the information need was not extracted. This is because not all studies included this data, and although direct participant quotes were extracted, they may not accurately reflect the priority of that need. Further research is required to confirm the information gaps identified in this review and establish the priorities of these needs. Once validated, these information priorities may act as the foundations of co-designed resources and tools providing accurate, targeted and understandable medication management guidance.

This is the first scoping review to explore and identify the medication management information needs of people living with dementia and their carers. We found that increased, tailored, well-communicated information from healthcare professionals is required. Healthcare professionals are recognized as important sources of this information and people living with dementia and their carers clearly expressed a desire to be more involved in decision-making processes. Written resources need to be more comprehensive and understandable to people living with dementia and their carers that directly address their information needs. Future studies should further confirm the identified information needs to develop targeted medication management information resources.

Amanda J Cross has received grant funding or consulting funds from the Medical Research Future Fund, Pharmaceutical Society of Australia and Dementia Australia Research Foundation. All grants and consulting funds were paid to the employing institution.

Alexander J Clough is supported by an Australian Government Research Training Program (RTP) Scholarship.

Mouna J Sawan is supported by the Dementia Centre for Research Collaboration Fellowship.

Amanda J Cross is supported by a National Health and Medical Research Council Emerging Leadership 1 grant (APP2009633).

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• Published: 15 February 2023

Dementia research needs a global approach

Nature Medicine volume  29 ,  page 279 ( 2023 ) Cite this article

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The international community needs to prioritize research on interventions and preventative measures for dementia that are likely to produce the greatest global impact.

Dementia is the seventh leading cause of death worldwide, and the number of people living with this disorder is expected to triple by 2050 . The burden of dementia is not equal across all countries, with around two thirds of people with dementia living in low- and middle-income countries (LMICs), where increases are predicted to occur more rapidly than in higher-income countries (HICs). Women are disproportionately affected by dementia, with greater prevalence rates than men in all age groups and a higher proportion of deaths. Women are also responsible for providing roughly 70% of informal care hours globally, with the highest proportions being in LMICs.

Although progress has been made, research into dementia remains fragmented and siloed to areas unlikely to generate the greatest global impact. Even the recent approval of lecanemab by the US Food and Drug Administration is tempered by the fact that the cost and infrastructure requirements of this treatment are likely to be prohibitive for LMICs — where most people with dementia reside. The World Health Organization (WHO) global status report on the public health response to dementia in 2017–2025 highlights the need for increased efforts globally to reach the dementia targets set for 2025 by Member States. The report’s bottom line is unequivocal: it is time for the international community to prioritize research on interventions and preventative measures that are likely to benefit all people at risk of dementia.

On 4 October 2022, the WHO released a dementia research blueprint to support implementation of the Global action plan on the public health response to dementia in 2017–2025, representing a first-of-its-kind publication in the context of non-infectious diseases. Leveraging key lessons learned from previous WHO efforts to prioritize and coordinate research into infectious diseases, the blueprint emphasizes key objectives across the entire dementia research spectrum that will have the greatest impact on the global burden of this devastating disorder. For example, a better understanding of the prevalence and incidence of dementia, the costs of illness and the prevalence and impact of risk factors is needed in LMICs and other ethnic and regional groups. Research into the mechanisms of dementia, such as biomarkers and genetic and epigenetic markers, should include and account for differences in these groups. This may require improved engagement and collaboration with communities that may be less willing or unable to participate in these types of studies.

Studies in HICs have reported a decrease in the prevalence of dementia, linked to modifiable dementia risk factors. These exciting findings suggest that modification of risk factors could slow cognitive decline and delay the onset of dementia, or prevent it altogether. Given the costs of dementia care, primary prevention is likely to be the cheapest and easiest way to reduce the projected global impact of dementia. Yet there are little data available on modifiable risk factors in LMICs or in culturally, ethnically and sexually diverse sub-populations in both HICs and LMICs. Furthermore, the data used to calculate these risk factors are from HICs, despite studies showing that some risk factors are more prevalent than others in LMICs and account for more cases of dementia there than in the rest of the world . Differing environmental and social exposures also influence dementia risk. This includes exposure to air pollution and pesticides, which is associated with an increased dementia risk, whereas proximity to green spaces is linked to positive cognitive outcomes.

There are also few robust studies on sex-specific risk factors such as early menopause and complications during pregnancy and on the differential effect of risk factors in men and women, as recently shown for cardiovascular events. It is now generally accepted that longevity alone is not responsible for sex differences seen in dementia, and studies are increasingly highlighting a biological component. Men and women with Alzheimer’s disease (AD) exhibit different cognitive and psychiatric symptoms, and women show faster cognitive decline after a diagnosis of mild cognitive impairment or AD dementia. Epidemiological studies demonstrate that the allele encoding apolipoprotein E confers different AD risk profiles on the basis of sex, with women who have the allele encoding apolipoprotein E-ε4 being at greater risk for developing AD than age-matched men are. Despite these findings, little to no data are available on sex differences in the efficacy and safety of drugs used in recently completed phase 3 clinical trials for mild to moderate AD. Furthermore, women remain under-represented in clinical trials for AD . Systematic studying and reporting of sex differences in disease symptomatology, biomarkers, progression, risk factors and treatment responses will be crucial for efforts to reduce the global impact of dementia.

Funding is obviously the key driver of research. Data for 2019 indicate that although funding for dementia has increased, it is directed mainly toward research in HICs. Of the 50 organizations and institutions that received the most grants for dementia research in 2019, 41 were in the United States, 6 were in the United Kingdom and 3 were in Canada. Furthermore, the vast majority of funding is directed toward research into AD, despite the fact that dementia is caused by several diseases. Although increased funding for dementia research is a step in the right direction, this needs to happen in a more structured and equitable fashion.

Dementia is highly complex, and the challenge of tackling the global burden of this disorder cannot be overcome by people working in silos. Considerable research gaps exist in the understanding of this disorder, particularly in areas in which its burden is greatest. Closing these gaps requires implementation of a harmonized global research plan with equitable inclusion and research capacity-building in under-resourced settings. Only such a level of global research prioritization can ensure that ongoing research efforts deliver the greatest impact possible.

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• Dementia Basics
• Signs and Symptoms of Dementia
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• Health Equity in Alzheimer's and Dementia

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Achieving Health Equity in Alzheimer's and Dementia

• The number of Alzheimer's disease cases is expected to double by 2060, with the largest increases expected among people from racial and ethnic minority groups and women.
• Understanding how people from different racial and ethnic groups view, access, and experience health care is important to improving Alzheimer's and dementia care.

The conditions in which people are born, grow, work, live, and age are known as social determinants of health (SDOH). They are the underlying social, economic, policy, and other nonmedical factors that influence health.

These conditions can:

• Systematically limit opportunities for members of some groups to be healthy.
• Have a major impact on a person’s health, including their risk for Alzheimer's disease and related dementias (ADRD).

More work needs to be done to determine the exact relationship between these factors and dementia. But there is growing research around the social and economic factors that contribute to a person's health status, including their risk for dementia. These factors, as well as public health solutions to address disparities in ADRD, are explored below.

Who is affected

Alzheimer's disease is the most common form of dementia. 1

A recent study suggests that the number of people with clinical Alzheimer's disease is expected to increase from about 6.9 million people in 2024 to about 14 million people in 2060. 1

• The largest increases are expected among people from racial/ethnic minority groups. 1
• Cases among Hispanic adults are expected to increase 4 times, from 870,000 in 2024 to 3.7 million in 2060. 1
• Cases among Black adults are expected to more than double, from 1.3 million in 2024 to 3.1 million in 2060. 1

There are a number of factors that may account for the increased risk of Alzheimer's disease among these groups, when compared to White populations:

• Higher prevalence of conditions like heart disease and diabetes, which are risk factors for dementia.
• Lower levels of education.
• Higher rates of poverty.
• Greater exposure to adversity and discrimination.

Sex differences

Significantly more women than men have Alzheimer's disease. 1 This is primarily because women typically live longer than men.

The disparity between women and men is expected to widen in the coming decades.

Between 2020 and 2060:

• The number of both women and men with Alzheimer's disease is expected to more than double.
• The number of women with Alzheimer's disease is expected to increase from 3.7 million to 8.2 million.
• The number of men with Alzheimer's disease is expected to increase from 2.3 million to 5.6 million.

Disparities in ADRD care and research

Unequal access to quality care.

Experiences in ADRD care and support services can be different depending on race, ethnicity, geography, and social and economic factors.

For example, factors in health care settings that can contribute to disparities in ADRD care include:

• Cultural differences between providers and persons with ADRD, leading to communication problems.
• Negative social attitudes toward patients from other races or ethnicities.

Community factors that can contribute to health care disparities in some racial and ethnic groups include:

• Limited community awareness and understanding of ADRD.
• Barriers to accessing high-quality health care.
• Challenges getting a proper diagnosis and effectively managing the disease.

Unequal treatment of racial/ethnic minority caregivers

Caregivers are an important part of the care and support team for people with ADRD. Yet an Alzheimer's Association report of caregivers from racial and ethnic minority groups showed that: 2

• Half or more of caregivers said they faced discrimination when navigating health care settings for their care recipient. 2
• Caregivers' top concern was that providers or staff did not listen to what they were saying because of their race or ethnicity.

Unequal representation in ADRD research

These disparities go beyond the medical care provided to patients with ADRD and their caregivers. They include unequal representation of Black, Hispanic, Asian, and American Indian or Alaska Native persons in clinical trials for Alzheimer's disease.

• This may limit the knowledge we have and affect the care these individuals receive.

Reducing health disparities

Public health response.

Understanding the disparities in ADRD is the first step toward developing and implementing strategies and services for those most at risk for developing the disease.

There is still much work to be done to address health and health care disparities in ADRD care 3 . Public health agencies can address this problem by helping:

• Prepare the workforce to care for a racially and ethnically diverse older adult population.
• Increase diversity among providers for dementia care.
• Engage, recruit, and retain diverse populations in ADRD research and clinical trials.
• Enhance access to health care services.
• Improve the environments where we live, learn, work, and play.
• Rajan KB, Weuve J, Barnes LL, McAninch EA, Wilson RS, Evans DA. Population estimate of people with clinical Alzheimer's disease and mild cognitive impairment in the United States (2020–2060). Alzheimers Dement . 2021;17(12). doi: https://doi.org/10.1002/alz.12362
• Alzheimer's Association. Special Report: Race, Ethnicity and Alzheimer's in America. 2021. https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report-2021.pdf
• Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement. 2024;20(5):3708-3821. https://doi.org/10.1002/alz.13809

Alzheimer's Disease and Dementia

Dementia is not a specific disease. It is a general term for having trouble remembering, thinking, or making decisions that affect everyday activities.

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In 2 papers, researchers describe potential new neurodegenerative disease treatment approach

William McEwan, Ph.D., spent years unraveling how an antiviral protein, tripartite motif-containing 21 (TRIM21), protects our cells from infection. Working in the lab of Leo James, Ph.D., McEwan and collaborators realized that TRIM21 marks viruses to be destroyed by the cell’s waste disposal system —but only activates when enough of the proteins cluster together.

McEwan and James have now taken advantage of TRIM21’s cluster activation by turning it against another protein with a penchant for aggregation: the misfolded tau protein that causes Alzheimer’s and other neurodegenerative diseases. In two new papers, they demonstrate how two TRIM21-based techniques can remove tau tangles inside of mouse neurons while leaving healthy tau alone and improve mobility in a mouse model of Alzheimer’s disease.

“These two articles by the groups of William McEwan and Leo James are very interesting,” Einar Sigurdsson, Ph.D., a neuroscientist at NYU Grossman School of Medicine, and colleagues wrote in a forthcoming commentary that Sigurdsson shared in advance with Fierce Biotech. “Both of these potential therapies are successful in clearing pathological tau.”

Our cells normally use TRIM21 as a last line of defense against viruses that manage to breach the cell membrane. Once McEwan, now at the UK Dementia Research Institute at the University of Cambridge, understood how TRIM21 is activated by bunching together, he saw its potential to go after tau aggregates right away.

“It's only when it's forced to cluster on the surface of a virus that it becomes activated,” McEwan told Fierce in an interview. “We asked whether this could therefore allow us to encode specificity for aggregates.” In a 2017 study, he found that TRIM21, combined with antibodies that target tau, could effectively destroy tangles of misfolded tau protein in human cells.

To turn TRIM21 into a treatment, McEwan and James, of the Medical Research Council Laboratory of Molecular Biology in Cambridge, needed to make the molecule smaller and simpler. They first isolated the part of the protein that does the antiviral dirty work, called the RING domain, and then linked it to two different tau-targeting molecules: a miniature antibody (nanobody) called F8-2 and tau protein itself.

The team engineered genes to code for the RING constructs and delivered them to mice using an adenovirus vector, commonly used in gene therapy. Injecting the RING-nanobody gene into mice with pathogenic tau, either directly into their brains or in their tails (depending on the vector), successfully cleared the aggregated proteins from their brains while not decreasing overall tau levels. The results were published in Science on Aug. 29.

In the other study, the team used tau protein itself as bait, because the misfolded tau seen in Alzheimer’s stick together and turn healthy tau pathological. This RING-Bait gene therapy also cleared tau tangles in mouse brains, and treated mice were able to walk more quickly and with more coordination. These results appeared in Cell on Sept. 13.

“It would have been interesting to see how [the two techniques] compare under identical conditions,” Sigurdsson and colleagues said in their commentary. “The antibody approach would seem to be safer because of better specificity and the RING-domain could possibly be cleaved to some extent from the mutant tau, which could then become pathological.”

“It's a hypothetical possibility” that the tau bait could separate from RING, McEwan said. “We didn't see evidence of that in our study, but it's definitely something you would want to keep an eye out for.”

Recent years have seen a boom in therapies that go after tau, which is a tougher target than the other main neurodegenerative protein—amyloid beta—because it mostly sits inside of brain cells rather than outside of them. Sigurdsson recently published a paper on a gene therapy that produces tau-targeting antibodies , and, in July, AC Immune presented preclinical data on a new class of antibody-drug conjugates that the biotech thinks has “landmark” potential.

McEwan said he’s looking to set up a company to develop other TRIM21-based degrader molecules. He also plans to continue using the new RING techniques to study the basic biology of tau in neurodegenerative disease.

“What really pays is the molecular understanding of the pathogenesis of the disease and the molecular pathways that could be applied to treat it,” McEwan said. “The investment that charities and governmental bodies have put into basic research is beginning to come to fruition.”

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Did a criminal Russian academic paper mill use AI to plagiarize a BYU professor and his student?

Academic journals need better ways to detect and deal with fraud, bioinformatics professor sam payne says..

By Tad Walch

The academic theft was so shameless that Brigham Young University biology professor Sam Payne couldn’t process what he saw on his computer screen.

The academic journal BioSystems had asked Payne to provide a peer review of a paper relevant to his own bioinformatics research, but the moment Payne began to read it he realized the paper wasn’t just related to his work, he believed it literally was his work. Some of the data tables were identical to his own.

“I was so surprised that I had to double check that it was really what I had thought,” he told the Deseret News. “When I read the paper, I first went to talk to my graduate student Hannah Boekweg, who was the lead author of the paper being plagiarized. Even when I described it to her, I was worried that I was somehow mistaken.

“It was so brazen, so clearly plagiarized. I just needed secondary confirmation that this was really happening.”

Payne alerted BioSystems, which rejected the paper in March. But in July, Payne found a reworked version of his and Boekweg’s paper had been published in the journal Proteomics under the names of five other researchers.

This version was more sinister; it was Payne’s and Boekweg’s paper, but it used the third person. Payne believes it was run through an artificial intelligence filter to foil plagiarism checkers.

“I immediately recognized that this was a con and it would be really damaging to science more than it would be to me personally,” Payne said. “My first real reaction was trying to figure out who to contact to get this retracted. Luckily I was able to get in touch with the editor of Proteomics and notify them about the situation.”

A BYU colleague put him in touch with the journal’s parent company, Wiley Publishing.

“Being able to talk to Wiley and their Research Integrity Unit really helped me not be too worried/scared/upset,” Payne said in an email. “I understood their process and was trusting that it would get resolved. If I had been alone in this, it would have been a much different story. But I did not feel helpless. I would say that I was very fortunate and am grateful for my colleagues who helped me find the connections.”

A Wiley spokesperson told Nature magazine , “This paper was simultaneously submitted to multiple journals and included plagiarized images,” adding that, “Our investigation confirmed that systematic manipulation of the publication process was at play.”

Who plagiarized the paper for publication?

So, who stole Payne’s and Boekweg’s work?

The short answer is we may never know, but the hunt for the academic thieves highlighted a major problem in academic publishing.

Proteomics retracted the paper and published a statement that said it had contacted four of the five authors, who said they “did not participate in the writing and submission of the article and gave no consent for publication.” The fifth didn’t respond.

“I don’t know any of the authors, and the situation is still not totally clear as to what actually happened,” Payne told the Deseret News. “In the retraction, several authors say that they were unaware of this paper — including the person listed as the contact author. This is a rather confusing scenario. So it’s not clear to me that we really know what happened.”

Nature magazine published an article about Payne’s plight and its own investigation into what happened. Nature said its news team found links between several of the listed authors and a company called International Publisher, an academic paper mill in Moscow.

International Publisher’s website advertises a selection of more than 10,000 manuscripts, Nature reported, and researchers can pay $500 to $3,000 to be listed as one of the authors of a reworked paper.

Brian Perron, a professor of social work at the University of Michigan who also works as what Nature called a misconduct sleuth, told the magazine that the allegedly plagiarized papers carried several signs of paper-mill articles, including that fact they were submitted to Biosystems and Proteomics in close proximity. (Nature has reported about these hallmarks in the past .)

What should academic publishers do to avoid plagiarism?

Payne had previously had a student work on methods to detect fraud and once gave a talk himself about detecting data manipulation, but AI text re-phrasing was new to him.

Payne said that as disconcerting as it was for him and Boekweg, the incident provided an opportunity for academics to consider reform.

He praised Biosystems for quickly rejecting the paper when he discovered the fraud, but he was certain it would be submitted to other journals and tried to learn whether the academic journal had a way to warn other journals that a fraudulent paper existed.

“First, we need a better way to detect fraud” he said. “Because this is a re-phrase of text, it evades plagiarism checkers. We need a much better method for finding fraud.

“Second, we need a better way to deal with fraud. Our current system is not able to handle many scenarios. I’m not an expert here, but hope that publishers take a serious look at their stewardship.

“Third, we need to address the root of the problem. Ultimately this is not a problem of technology, but a problem of integrity.”

Payne said the situation reminded him of a statement made by the President Spencer W. Kimball of The Church of Jesus Christ of Latter-day Saints. In 1975, he gave what is called “ The Second Century Address ” for the centennial of BYU.

“Much misery results from flaws in character, not from failures in technology,” President Kimball said.

“Education needs to include teaching integrity,” Payne said. “This is one area where BYU has an advantage, (with) our dual heritage and ... consistent emphasis to fulfill both an academic and religious mission.”

The original paper by Payne, Boekweg and three others was published in 2021 in Molecular and Cellular Proteomics.

“As single cell proteomics is a new field, we created a method for this simulation and demonstrated how to appropriately design an experiment,” Payne said.

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Assistive Technologies in Dementia Care: An Updated Analysis of the Literature

Alessandro pappadà.

1 Department of Psychology, University of Bologna, Bologna, Italy

Rabih Chattat

Ilaria chirico, marco valente, giovanni ottoboni.

2 “G. Prodi” Interdipartimental Center for Cancer Research, Bologna, Italy

Associated Data

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author/s.

Objectives: Technology can assist and support both people with dementia (PWD) and caregivers. Recently, technology has begun to embed remote components. Timely with respect to the pandemic, the present work reviews the most recent literature on technology in dementia contexts together with the newest studies about technological support published until October 2020. The final aim is to provide a synthesis of the timeliest evidence upon which clinical and non-clinical decision-makers can rely to make choices about technology in the case of further pandemic waves.

Methods: A review of reviews was performed alongside a review of the studies run during the first pandemic wave. PsycInfo, CINAHL, and PubMed-online were the databases inspected for relevant papers published from January 2010.

Results: The search identified 420 articles, 30 of which were reviews and nine of which were new studies meeting the inclusion criteria. Studies were first sorted according to the target population, then summarized thematically in a narrative synthesis. The studies targeting technologies for PWD were categorized as follows: monitoring and security purposes, sustaining daily life, and therapeutic interventions. Each category showed potential benefits. Differently, the interventions for caregivers were classified as informative, psycho-education programs, psychosocial-supportive, therapeutic, and cognitive/physical training. Benefits to mental health, skills learning, and social aspects emerged.

Conclusions: The evidence shows that technology is well-accepted and can support PWD and caregivers to bypass physical and environmental problems both during regular times and during future pandemic waves. Nevertheless, the lack of a common methodological background is revealed by this analysis. Further and more standardized research is necessary to improve the implementation of technologies in everyday life while respecting the necessary personalization.

Introduction

According to recent statistics, a demographic revolution is currently underway: the average life expectancy is rising worldwide, and the population of persons aged over 60 is going to continually grow until 2050 (United Nations, Department of Economic and Social Affairs, and Population Division, 2020 ; WHO | Global Action Plan on the Public Health Response to Dementia 2017–2025, 2020 ). Even though aging is part of human development, one of the main risks associated with it concerns dementia: 5% of the world population aged over 65 is affected by some types of dementia, and this prevalence doubles around every 5 years (Corrada et al., 2010 ).

Recently, assistive technologies (ATs) have become one of the fundamental pillars of health strategies. They include “ any product or technology-based service that enables people of all ages with activity limitations in their daily life, education, work or leisure ” (Association for the Advancement of Assistive Technology in Europe [WorldCat Identities], 2018 ). Regarding dementia, ATs can increase motor autonomy and reduce the risks associated with wandering thanks to their GPS technology (Liu et al., 2017 ); they can also sustain people's cognitive abilities—those required to accomplish necessary daily activities (Nishiura et al., 2019 ). Again, ATs play a role in supporting the policies surrounding aging in place . Indeed, they can delay people's institutionalization or reduce the number of severe clinical cases requiring admission to care homes (Brittain et al., 2010 ). Besides, technology is useful when admission into a care facility becomes mandatory or is the person's preferred option. In these cases, ATs allow for easier communication between residents and relatives and overcome social barriers (Winstead et al., 2013 ).

Furthermore, ATs increase people's safety by sustaining independence while respecting dignity (Brittain et al., 2010 ). Finally, ATs are associated with benefits when conveying rehabilitation and psychosocial interventions (Peek et al., 2014 ). Technological devices are cheap and affordable (Al-Oraibi et al., 2012 ). Intuitive interfaces support the users' sense of control by highlighting cause–effect relations between tasks and actions (Leng et al., 2014 ). Thanks to personalized items and control processes focused on responding to specific needs and preserving abilities, they increase users' participation in interventions (Smith and Mountain, 2012 ; Darcy et al., 2017 ). Finally, technology promotes remote support and assistance by overcoming environmental barriers (Azad et al., 2012 ).

On the other hand, ATs often present a few limitations. Devices might be experienced as intrusive and invading the users' privacy (Dorsten et al., 2009 ). Again, they can be obstructive and increase the stigma that sometimes comes with the disease (Pritchard and Brittain, 2015 ). Moreover, complicated features, or intense learning sessions, might underline cognitive abilities loss, leading to frustration and rejection of technology (Peek et al., 2014 ).

Recently, the remote feature has begun to characterize ATs more and more, as it becomes useful to bridge the distance between people (Cuffaro et al., 2020 ). Capitalizing on the positive evidence about AT and dementia (Meiland et al., 2017 ), it may be conceivable to assume that ATs might play a key role in the attempts to alleviate the future burden lockdowns might bring with them (INDUCT, 2020 ). At the same time, to keep people safe, technological devices might support people with dementia and caregivers during the months of lockdown (Meiland et al., 2020 ).

Timely with respect to the pandemic, the present work reviews the most recent literature reviews on ATs in dementia contexts together with a review of the new studies adopting ATs during the virus outbreak.

The current work's final aim is to provide a tangible summary upon which clinical and non-clinical decision-makers can base their choices about which technological intervention tools they can deploy to directly compensate/improve specific dysfunctionalities affecting either people with dementia or caregivers even during future pandemic waves.

Data Collection and Strings Definition

PsycINFO, PubMed, and CINAHL were the online databases where we sought peer-reviewed papers published from January 2010 to October 2020 ( Table 1 ). The research query combined keywords from three different research strings (A, B, C) through the Boolean operators “AND” and “OR” ( Table 2 ). String A included the studies that were related to technology in general. Due to the lack of standardized terminology (Roest et al., 2017 ), several terms were derived from the APA thesaurus. String B selected the target population. String C filtered for the methodology of interest.

Initial search data.

Complete query used.

Typology of Review and Eligibility Criteria

To summarize the most recent literature related to the use of technology, the present review combines the review of reviews methodology (Smith et al., 2011 ) with a literature review including the most recent studies on the topic that are still not reviewed.

Inclusion Criteria

The included studies are those that are as follows: peer-reviewed, published from January 2010 to October 2020, available in English or Italian, and those that deal with any technological devices. The studies analyze interventions on both people diagnosed with dementia and their caregivers. Moreover, we ascertain any method: experimental, quasi-experimental, or single-case studies.

Exclusion Criteria

We excluded studies if the target population was composed of MCI or the authors did not explicitly sort the results between PWD and MCI. Moreover, we do not accept any papers reporting only dementia technological assessments or diagnoses.

Selection Process

The selection process is showed in the PRISMA flow diagram in Figure 1 . The search brought out 420 papers, 123 of which were removed because of duplicates. Both the title and the abstract of the 297 remaining documents were checked. Ninety-two documents emerged from this former analysis, of which 39 were review papers, and 53 were new studies. Nine reviews were further excluded. Once they were fully read, they did not meet the eligibility criteria: three were excluded for the target population, four were excluded because devices were aimed only at diagnosing, and two were excluded for the methodology.

Revision flow chart.

Out of the 53 new studies, 41 were already in the reviews, and three of them did not meet the inclusion criteria: two of them due to the target population and one for the methodology (i.e., protocol report). In the end, 30 reviews and nine new studies were included in the present work and thoroughly analyzed.

Stages of Analysis

At first, we assessed the quality of the included systematic reviews through either the AMSTAR tool guidance for the systematic reviews (Shea et al., 2009 ) or the SANRA scale for the non-systematic reviews (Baethge et al., 2019 ; Tables 3 , ​ ,4, 4 , respectively). A formal assessment of the new studies was not performed, as it was urgent to update the pandemic-related literature, despite the study quality.

Quality assessment of systematic reviews using AMSTAR.

Scores: CA, can't answer; N, no; NA, not applicable; Y, yes (Shea et al., 2009 ) .

Quality assessment of non-systematic reviews using SANRA.

Scores: 0–2 (Baethge et al., 2019 ) .

Moreover, we aggregated the new studies to calculate the overall risk ratio (Balduzzi et al., 2019 ). A risk ratio (RR) >1 signifies that the intervention groups manifest better outcomes than the control ones. The packages meta and metasens within the freely available statistical environment R facilitated ratio calculation (Schwarzer et al., 2015 ; R Core Team, 2019 ).

Yielded works were parsed according to the target population (PWD and/or caregivers). In Table 5 , we classified the data from the reviews about PWD. In Table 6 , we instead reported the data about the new studies (i.e., sample size, characteristics, settings, and intervention length). In Table 7 , we summarized the data from the reviews about PWD caregivers. In particular, Tables 5 , ​ ,7 7 display data about the types of conducted interventions, focus, used methodology, main results, and review conclusions. Hence, a thematic analysis of the outcomes was performed to classify the papers according to the aims underpinning the technological devices studied. Narrative synthesis integrates and appraises the quantitative and qualitative findings and the inclusion of studies using different methodologies. Two authors (AP and GO) reviewed and discussed the inclusion potential studies, and any discrepancy was resolved by a third reviewer (RC) through discussion until an agreement was reached. Thematic analysis was performed as an iterative process. Studies were read and re-read by the researchers, and key themes were identified for each paper and then amalgamated and integrated across studies.

Interventions for PWD.

New studies for PWD.

Interventions for caregivers.

Results are sorted into two main sections, one per target population involved. As shown in Table 3 , 12 out of the 30 reviews are related to online interventions targeting caregivers, 16 of them concern PWD, and two reviews target both PWD and caregivers. On the other hand, all of the nine new studies address PWD issues.

Quality Assessment of the Included Reviews

The quality assessments regarded the extent to which the 23 systematic reviews and seven reviews met the inclusion criteria.

All the systematic reviews received an AMSTAR score between 5 and 9, with a mean score of 7.4 (standard deviation = 1.2). All reviews were designed a priori (AMSTAR item 1); more than half of the analyzed works indicated that study selection and data extraction were performed by two authors minimum (item 2); all the reviews were based on electronic searches (item 3); 14 reviews included the status as an analyzed criterium (item 4); no reviews provided a list of excluded studies (item 5); all the reviews but one provided tables displaying the characteristics of the analyzed studies (item 6); 17 out of 23 reviews performed the study quality assessment (item 7); all the reviews but one based their conclusion on study quality levels (item 8); only four reviews performed a meta-analysis (item 9); 10 reviews reported publication bias (item 10), and 21 reviews discussed the conflicts of interest (item 11).

The reviews not analyzed via AMSTAR scores were subjected to the SANRA process (Brando et al., 2017 ; Dove and Astell, 2017 ; Klimova and Maresova, 2017 ; Neubauer et al., 2018 ; Lorenz et al., 2019 ; Rathnayake et al., 2019 ; Yousaf et al., 2019 ). Overall, the studies achieved a score of 11.1, with a standard deviation of 0.8. Across the items (i.e., justification of the article's importance for the readership, statement of concrete aims or formulation of questions, description of the literature search, referencing, scientific reasoning, and appropriate presentation of data), and no study scored 0.

Finally, we performed a risk ratio and a forest tree calculation to understand the effectiveness of the new studies. If the risk ratio was calculated higher than one, the study's technologies have an effective impact on the target ( Figure 2 ).

The figure displays new studies' effect size.

Interventions for PWD

We classify the interventions targeting people with dementia into the four following macro-categories. Monitoring and security included studies with remote technologies aimed at detecting risky behavior and compensating for environmental obstacles. Daily living sustainment contains studies investigating devices supporting the PWD's cognitive functions. The therapeutic technology-based interventions were split between the studies that investigated cognitive aspects and the ones addressing psychosocial care.

Monitoring and Security

The interventions regarding monitoring and security appear to be analyzed in 10 reviews and one new study from our analysis. Lorenz et al. ( 2019 ) underline how technology targeting PWD living in their homes is mainly aimed at monitoring them or increasing the environment's security. The most used devices for achieving this purpose are video cameras. These devices might be used to ascertain the person in real time or record tapes for later analysis (Lorenz et al., 2019 ; Yousaf et al., 2019 ). The included reviews also reveal how video monitoring allows us to increase medication compliance in people with dementia (Fleming and Sum, 2014 ; El-Saifi et al., 2018 ). Video monitoring also leads to relevant benefits inside care homes, and it happens when it is combined with bed sensors. Both these technologies allow us to reduce intrusive check-ups overnight from healthcare professionals by avoiding sudden and unnecessary awakenings. Despite a few technical issues and the false alarms that emerged during the studies, the devices lead to a positive quality of life-related outcomes and high levels of acceptance from either PWD, their caregivers, and staff members (Maia et al., 2018 ; Daly Lynn et al., 2019 ). Finally, one review suggests the adoption of the actigraphy technique as having potentially worth in helping to monitor people in care home settings (Favela et al., 2020 ).

Other relevant devices for monitoring are the position trackers and locators. These are usually based on GPS technology featuring most of the ordinary smartphones. Neubauer et al. ( 2018 ) analyzed monitoring technologies for PWD and reported that GPS devices are usually implemented in wearable items, such as belts or wristwatches. CANDEROID , for example, is a system based on a wrist sensor combined with a smartphone App allowing the caregiver to monitor and track the position of the PWD in real-time (Brando et al., 2017 ). Benefits to the perceived security and quality of life emerge from using these technologies by PWD and informal caregivers (Lorenz et al., 2019 ). Moreover, as some of the devices imply the active roles of PWD, they and their caregivers can contact each other to ask for mutual information or help (Lorenz et al., 2019 ).

Aside from the beneficial impact these devices offer, some technical issues can emerge in GPS-based technologies, such as position inaccuracy or signal instability (Fleming and Sum, 2014 ). However, due to the technological progression, these problems have been fixed insomuch as they become a useful aid in managing wandering behaviors (Neubauer et al., 2018 ; Lorenz et al., 2019 ).

Among security systems, many studies focus on smart-homes technology aimed at reducing risk and increasing the quality of life of the home denizens (Fleming and Sum, 2014 ; Tyack and Camic, 2017 ; Neubauer et al., 2018 ; Brims and Oliver, 2019 ; Daly Lynn et al., 2019 ; Lorenz et al., 2019 ). In domestic settings, automatic sensors are used to detect sudden heat changes, gas leakages, forced doors opening, and so on or to facilitate the management of light switches and water valves (Lorenz et al., 2019 ). An example is the COGNOW program, which capitalizes on a central control panel capable of administrating all the different technological tools implemented in the house (Tyack and Camic, 2017 ).

Another relevant topic is related to the use of technology for fall prevention. Positive outcomes are observed both with basic support, such as light pathways on the ground or bright handrails, and with a more complex system, such as electronic armbands combined with modern sensors, which send alarms to an assistance center in case of an emergency. Specifically, three randomized controlled studies show that the fall risk featuring the experimental groups is 50% lower than those expressed in the control groups. Moreover, it emerges that the use of ATs decreases the number of risky behaviors, as leaving the home incautiously might result in negative consequences. In contrast, for what concerns the quality of life and the reduced institutionalization, no significant positive outcomes emerged from these studies (Brims and Oliver, 2019 ).

In care home settings, tagging systems can be implemented: they can be envisioned as intangible spatial barriers that PWD should not overstep during specifically scheduled times; otherwise, an alarm would start ringing (Fleming and Sum, 2014 ). Tagging technologies are well-accepted both by PWD and healthcare professionals, as they are less obtrusive than physical constraints (Neubauer et al., 2018 ). Moreover, tagging systems increase both the perceived and the actual safety (Daly Lynn et al., 2019 ). In contrast, the devices that limit people's autonomy, such as electronic lock doors, are not well-accepted, as they are perceived as dehumanizing despite the improved safety of PWD (Neubauer et al., 2018 ). In terms of psychological outcomes, non-constraining technologies show positive benefits on the levels of PWD's perceived well-being and anxiety (Neubauer et al., 2018 ). Lastly, the reviews show that the alarms placed between the rooms are associated with positive qualitative outcomes in care home settings (Yousaf et al., 2019 ).

Daily Living Sustainment

The issues of interventions regarding daily living sustainment using ATs appear in seven reviews and four new studies from our analysis. Daily living sustainment is the primary purpose of ATs with PWD (Lorenz et al., 2019 ). Indeed, ATs can support cognitive functions, such as different memory types, spatio-temporal orientation, and language. For what concerns the prospective memory, devices like digital organizers and electronic reminders can improve the quality of life of PWD (Brando et al., 2017 ; Lorenz et al., 2019 ; Lancioni et al., 2020 ). An example is the App MindMate , an electronic calendar designed to help PWD remember the daily schedule. The App has been evaluated arranging simple tasks, such as “call the researcher,” which people with dementia had to pursue at scheduled times. After 5 weeks of intervention, MindMate showed benefits on the prospective memory of the PWD (McGoldrick et al., 2019 ). Other devices that are used to sustain prospective memories are pill dispensers. Controversial outcomes are associated with these technologies: some authors describe them as functional (Fleming and Sum, 2014 ; Maia et al., 2018 ), and others suggest that their usage is too complicated for PWD (Daly Lynn et al., 2019 ).

Regarding procedural memory, instead, positive outcomes emerge from using prompting systems. These consist of tools giving step-by-step prompts, either in visual or vocal forms, to guide PWD to achieve daily tasks as cooking, washing their hands, and setting the table correctly (Brando et al., 2017 ; Maia et al., 2018 ; Daly Lynn et al., 2019 ). Moreover, some potential benefits emerge from using mobile Apps to guide practical actions (Lancioni et al., 2020 ).

There is little evidence to endorse the application of ATs to sustain the memory of faces. The only identified intervention in this area concerns a randomized controlled trial (RCT) using an App called SSA (“ Social Support Aid ”). The App combines a smartwatch camera with an online database containing preloaded faces labeled with a personalized tag, such as “Emma, daughter.” The system aims to match the faces included in the database and the ones caught by the smartwatch camera. Once the match has finished, it notifies the person with the assigned tag in case of a positive match. PWD evaluates the App as too complicated, and it does not increase users' quality of life (McCarron et al., 2019 ).

For what concerns the spatio-temporal orientation, ATs are useful to sustain daily living. Apart from the already described electronic calendars, other devices are employed with PWD, such as monitors capable of harmonizing night-time awakenings in care home settings. These devices are usually placed in front of the PWD's bed, showing recommendations like “it's night, let's go back to sleep” and similar (Lorenz et al., 2019 ; Moyle et al., 2019 ). Moreover, it emerges that robot-assisted navigation can lead to positive outcomes to increase PWD's ability to move autonomously (Maia et al., 2018 ).

Regarding language, positive outcomes derive mainly from using smartphones in functional manners. In particular, improvements in the semantic component of language emerge when PWD use their smartphones to take notes of words or navigate the internet when they do not remember a definition (Brando et al., 2017 ). In the same fashion, Lorenz et al. ( 2019 ) report positive daily PWD experiences using SIRI , a famous virtual assistant. More evidence emerges regarding technologies to support the communication process: PWD answers more frequently to the incoming calls when the telephones are adapted to their perceptual and cognitive needs. Differently, these devices cannot improve the quality of life of the users ultimately, as they cannot solve broader problems such as remembering to call or whom the PWD have spoken to (Topo et al., 2002 ; Fleming and Sum, 2014 ).

Another piece of evidence supports the employment of telepresence robots to sustain social connections. It emerged from the pilot study led by Moyle et al. ( 2019 ) using the com-robot Giraff in an experimental setting with five PWD. Giraff is a wheel-based, remotely controlled device carrying a tablet that can convey videocalls. Giraff is also of human height, and the upper part of the robot may also be bent forward or tilted left and right, simulating social head gestures. The devices were evaluated as realistic and useful by four out of five PWD. Furthermore, the most appreciated aspect was the possibility to control Giraff remotely to make it move around the room.

Moreover, even some social aspects can be sustained by smart-home devices. Systems like the PAL4-Dementia allow both to manage the technological tools implemented in the house and start video calls with relatives or healthcare professionals (Tyack and Camic, 2017 ).

Although we observe that ATs interventions usually lead to positive outcomes for what concerns daily living, there is also a reported discrepancy between the experimental research and the actual uptake of the devices in everyday life. In fact, in this regard, some authors noted that the use of technology decreases in the follow-up because of disease development, limited financial resources, time- and burden-related constraints (Fleming and Sum, 2014 ; Lorenz et al., 2019 ).

Cognitive-Focused Therapeutic Interventions

From our analysis, the interventions regarding therapeutic support emerge in 13 reviews and three new studies. Technological devices, Apps, videoconferences, and software, convey and support different intervention categories targeting the PWD's cognitive functions, i.e., cognitive training, stimulation, and rehabilitation. García-Casal et al. ( 2017 ) carried out a review and meta-analysis of 12 computer-based cognitive intervention studies. Once they have analyzed the outcoming effects regardless of the intervention category, they report intermediate results regarding cognition and anxiety and small impacts concerning depression. In contrast, no consequences were observed in terms of the PWD's daily activities.

For what concerns cognitive training, mixed outcomes emerge among the analyzed reviews targeting people with dementia. In a review of four RCTs, Klimova and Maresova ( 2017 ) reported that half of the studies do not produce significant outcomes. One of them reported benefits on episodic memory and abstract reasoning, while the remaining study highlighted that computer-based cognitive interventions can slow down cognitive decline. Moreover, it emerges that the mHealth App can train, monitor, and self-assess the performance achieved in all the cognitive functions. Indeed, the Apps help PWD function better in their daily lives, especially if the users accept it because it is intuitive (Yousaf et al., 2019 ).

Technological devices mainly support cognitive stimulation interventions since stimulation is the most appreciated activity by PWD (Liapis and Harding, 2017 ; Daly Lynn et al., 2019 ), and it leads to an extensive generalization of the benefits (Brando et al., 2017 ).

Our analysis suggests that different stages of the dementia pathway are associated with preferred stimulation activities. People with mild or moderate dementia tend to prefer challenging tasks, such as the ones provided via videogames modality. Among videogames, an example is the software Big Brain Academy , which has a positive impact on perception, memory, logical reasoning, and general cognitive functioning (Brando et al., 2017 ). On the other hand, people with severe dementia prefer more static and sense-based activities, such as listening to music or watching videos (Liapis and Harding, 2017 ).

Besides, implementing a technological component in stimulation interventions allows us to compensate for sensory deficits thanks to apposite designed interfaces. For example, headphones and image projectors boost the auditory and the visual apparatus, respectively (Lazar et al., 2014 ). Additionally, many benefits emerge using innovative input systems, such as touchscreens, motion-sensors, and voice user interfaces. Tyack and Camic ( 2017 ) report that the interventions based on intuitive touchscreens led to positive mental health outcomes, perceived well-being, and satisfaction, especially in older people. Moreover, the request of learning how to use modern devices increases PWD's involvement, pride, and sense of mastery (Tyack and Camic, 2017 ). Tablets are also frequent in these programs of intervention. By reproducing multimedia or allowing PWD to express their art capacity, tablets support behavioral symptoms management while sustaining people's creative skills. The App ExPress Play , for example, can generate chord-based music thanks to the touchscreen (Tyack and Camic, 2017 ; Yousaf et al., 2019 ). In a similar vein, while studying the software recognizing and synthesizing human voices, Dethlefs et al. ( 2017 ) report that PWD appreciate voice user interfaces, as can be seen by increased involvement in computer-based cognitive stimulation programs. Again, devices based on motion sensors are highly recommended for PWD because they can compensate for the issues arising from memorizing device button-keys (Dove and Astell, 2017 ). Moreover, benefits emerge regarding the PWD's cognitive decrease associated with the disease, while enhancing their moods positively, as they stimulate people's movements (Dove and Astell, 2017 ).

For what concerns cognitive rehabilitation, instead, the literature shows that virtual reality can be a component used to recreate settings that are familiar to PWD or to let them practice with the execution of daily activities, such as cooking or shopping at the grocery shop. The adoption of the virtual setting produces better outcomes on the general cognitive functioning, learned skills, self-efficacy, and motivation, with respect to practicing the same activities within traditional environments. Moreover, by combining virtual reality headset and controller, visuospatial orientation and autonomous movements can increase (Brando et al., 2017 ).

Finally, some evidence related to therapeutic interventions remotely conducted using videoconferences emerge from the literature search. It is revealed that online memory clinics are positively accepted by PWD and mostly by living in rural areas (Weiner et al., 2011 ; Lorenz et al., 2019 ). Also, two RCT studies highlight that remote cognitive interventions produce benefits on PWD's general cognitive functioning, attention, memory, calculus, and phonemic and semantic verbal expression (Jelcic et al., 2014 ). Furthermore, it is revealed that some PWD and their caregivers express specific preferences for remotely conducted interventions since they limit laborious transfers (Fleming and Sum, 2014 ).

Psychosocial Interventions for PWD

From our analysis, we yield that technological devices can support psychosocial interventions such as reminiscence, light therapy, multisensory therapy, simulated presence therapy, and therapy based on social robots. Lorenz et al. ( 2019 ) point out that technologies can easily convey psychosocial interventions in home-care settings. For what concerns reminiscence therapy, technological devices might be useful as they allow you to select personalized multimedia and adequately stimulate the emotional memory (Inel Manav and Simsek, 2019 ). For example, in an RCT focused on the effects of the reminiscence therapy, YouTube videos obtain positive results that concern both PWD's cognition and mood (Inel Manav and Simsek, 2019 ). Moreover, by integrating a camera in smart-watches devices, it becomes possible to gather pictures or videos during daily living. The collected multimedia becomes useful vehicles during reminiscence therapy sessions (Lazar et al., 2014 ). Again, as soon as reminiscence therapy meets technological devices, such as with touchscreen interfaces, people's involvement increases. Indeed, people can autonomously feel competent and capable of handling the digital contents (Liapis and Harding, 2017 ; Tyack and Camic, 2017 ; Yousaf et al., 2019 ). Besides, the increased confidence in modern devices represents an opportunity to close the gap between social generations (Yousaf et al., 2019 ). The “ Computer interactive reminiscence and conversation aid – CIRCA ,” i.e., a program targeting the dyad PWD-caregiver, has led to positive results in the decision-making process and the social involvement and in particular for singing activities (Pinto-Bruno et al., 2017 ; Tyack and Camic, 2017 ).

Finally, technology allows to overcome environmental barriers and to conduct therapies from a remote position because they provide the opportunity to both communicate and access the same multimedia simultaneously (Lazar et al., 2014 ; Dethlefs et al., 2017 ). Dyads positively accept remotely delivered therapies because they can ameliorate the management of behavioral symptoms (agitation, irritability, and insomnia) (Lazar et al., 2014 ). In particular, MyBrainBook is an online platform aimed at conveying reminiscence therapy. By connecting PWD and their relatives and friends, they can still feel part of a social network. Moreover, as it capitalizes on a cloud environment to gather personalized content, it is useful when implementing the process of reminiscence (Dethlefs et al., 2017 ). Positive results also came out from interventions using tools to start the required applications for the therapies remotely. Such a strategy allows us to compensate for the lack of technological skills featuring some people (Yasuda et al., 2013 ; Lazar et al., 2014 ).

As it emerges for the reminiscence, even light therapies can be aimed at managing behavioral symptoms and they are mainly conducted in home-care settings. In particular, positive effects followed in the forms of agitation, circadian rhythms, and well-being (Fleming and Sum, 2014 ; Daly Lynn et al., 2019 ). Similar benefits come out using multisensory therapies, especially with the Snoezelen Room, which leads to positive results regarding well-being, and behavioral agitation. Despite this evidence, multisensory therapies have emerged to produce fewer effects than the immersion in real natural environments (Fleming and Sum, 2014 ).

Simulated presence therapies capitalize on technological devices; they involve videos that were pre-recorded by a family member. The videos recorded using spontaneous language lead to well-being improvement, fewer phone-calls during the night-time, and increased adherence to medical recommendations and compliance (Fleming and Sum, 2014 ; Hung et al., 2018 ; Daly Lynn et al., 2019 ).

The therapies based on social robots appear to produce contrasting evidence (Daly Lynn et al., 2019 ). Fleming and Sum ( 2014 ) highlight that adding a mechanical component does not lead to better improvements than therapies using regular pet plushies. Other authors, instead, report positive benefits on behavioral agitation, depressive symptoms, and social interactions, using the pet robots PARO, NeCoRo, AIBO , and CuDDler (Daly Lynn et al., 2019 ). On the other hand, using the communication robots COTA and PALRO , positive results emerge even with regards to the functional autonomy of PWD, especially for people over 80 with severe dementia (Obayashi et al., 2020 ).

New Studies Effectiveness

A total of six studies out of 10 did not use a control group. All of them but McCarron et al. ( 2019 ) reported the positive effects of technologies. The heterogeneity of the study pool was almost significant (See Figure 2 ). Once all the studies without control groups, with the addition of McCarron et al., were removed, the remaining three works showed a homogeneous risk ratio [RR = 1, 95%- CI: 0.93; 1.08]. As described previously, the study of McCarron et al. showed that no positive social engagement emerged in the 20 people enrolled in the smart-watch use compared to the 28 counterparts.

Interventions for Caregivers

The interventions targeting caregivers capitalize on different web interfaces and services. In particular, Hopwood et al. ( 2018 ) highlight how online interventions might be delivered either via private or public services. Private services include online tools available only for a restricted number of people, with access granted upfront invitation and/or after registration. These systems allow for the exchange of personal information, ensuring privacy protection. From our analysis, e-mails (Godwin et al., 2013 ; Boots et al., 2014 ; McKechnie et al., 2014 ; Dam et al., 2016 ; Hopwood et al., 2018 ), chats (Boots et al., 2014 ; McKechnie et al., 2014 ; Dam et al., 2016 ; Parra-Vidales et al., 2017 ; Waller et al., 2017 ; Hopwood et al., 2018 ) and videoconferences (Boots et al., 2014 ; McKechnie et al., 2014 ; Dam et al., 2016 ; Scott et al., 2016 ; Brando et al., 2017 ; Parra-Vidales et al., 2017 ; Waller et al., 2017 ; Egan et al., 2018 ; Hopwood et al., 2018 ; Ruggiano et al., 2018 ; Lorenz et al., 2019 ) emerge to feature the interventions for caregivers. Moreover, the evidence applying an online virtual setting with 3D avatars was useful to help caregivers communicate with each other while preserving a sense of privacy (O'Connor et al., 2014 ; Hopwood et al., 2018 ).

Public services include free-access content at everyone's disposal, such as the frequently used informative websites (Godwin et al., 2013 ; Boots et al., 2014 ; McKechnie et al., 2014 ; Brando et al., 2017 ; Parra-Vidales et al., 2017 ; Hopwood et al., 2018 ; Ruggiano et al., 2018 ; Lucero et al., 2019 ). Moreover, other services, such as blogs (Hopwood et al., 2018 ), forums, or selected social networks (Godwin et al., 2013 ; Boots et al., 2014 ; McKechnie et al., 2014 ; Dam et al., 2016 ; Parra-Vidales et al., 2017 ; Egan et al., 2018 ; Hopwood et al., 2018 ; Lorenz et al., 2019 ) and multimedia (Boots et al., 2014 ; McKechnie et al., 2014 ; Jackson et al., 2016 ; Scott et al., 2016 ; Brando et al., 2017 ; Egan et al., 2018 ; Hopwood et al., 2018 ; Ruggiano et al., 2018 ; Lucero et al., 2019 ) might be either private or public, as a function of the privacy settings set by the admin. Finally, it emerges that mHealth Apps for smartphones or tablets are used in online-based interventions for caregivers of PWD (Brando et al., 2017 ; Rathnayake et al., 2019 ).

Regarding the aims featuring the AT-based interventions, the analysis of the reviews suggests that we group the intervention aims into six groups: informative, psycho-education programs, psychosocial support, psychotherapy, cognitive training, and physical training. Informative interventions are deployed through websites providing information on many issues, such as the treatment and the management of dementia, the risks associated with the disease, and the implication on caregivers' health. Moreover, they provide useful links and contact information for community services (Godwin et al., 2013 ; Rathnayake et al., 2019 ) and are usually part of multicomponent programs (Boots et al., 2014 ; Brando et al., 2017 ; Hopwood et al., 2018 ; Lorenz et al., 2019 ).

Psycho-education programs mainly target caregivers' strategies and coping skills. Private services are preferred over public ones. When people seek help from healthcare professionals, such assistance can arrive through videoconferences or by watching recommended and personalized educative videos (Jackson et al., 2016 ; Parra-Vidales et al., 2017 ; Waller et al., 2017 ). Also, the mHealth App attempt was for the same purpose (Rathnayake et al., 2019 ). As it happens for informative interventions, even the psycho-education ones are often part of multicomponent programs together with psychosocial support or psycho-therapeutic interventions (Boots et al., 2014 ; McKechnie et al., 2014 ; Scott et al., 2016 ; Brando et al., 2017 ; Egan et al., 2018 ; Ruggiano et al., 2018 ; Lorenz et al., 2019 ; Lucero et al., 2019 ).

Psychosocial supportive interventions are focused on the improvement of caregivers' emotional well-being and social health through videoconferences among small groups of peers, chats, e-mails, or self-administered personalized multimedia content (Boots et al., 2014 ; McKechnie et al., 2014 ; Dam et al., 2016 ; Jackson et al., 2016 ; Waller et al., 2017 ; Egan et al., 2018 ; Hopwood et al., 2018 ; Ruggiano et al., 2018 ; Lorenz et al., 2019 ; Lucero et al., 2019 ). The participation of a healthcare professional is not mandatory (Hopwood et al., 2018 ).

Psycho-therapeutic interventions usually aim to reduce depressive or anxious symptoms and dealing with caregivers' burdens. The cognitive-behavioral approach is popular; meanwhile, cognitive reframing and relaxation are the most frequently applied techniques. For these interventions, the preference for the videoconferences has overcome the one for written communication (Boots et al., 2014 ; McKechnie et al., 2014 ; Jackson et al., 2016 ; Brando et al., 2017 ; Egan et al., 2018 ; Lorenz et al., 2019 ). Besides, the monitoring of the caregiver's emotional state is an essential aspect of the process: through the mHealth App, well-being-related symptoms can be self-assessed and shared with care providers together with other medical records (Brando et al., 2017 ; Rathnayake et al., 2019 ).

Interventions for caregivers based on cognitive and physical training promote healthy lifestyles and future healthy aging. The cognitive practice usually targets decision-making and problem-solving processes (Boots et al., 2014 ; Waller et al., 2017 ; Egan et al., 2018 ; Ruggiano et al., 2018 ; Lorenz et al., 2019 ). On the other hand, physical training pertains to easy motor exercises (Ottoboni et al., 2018 ; Ruggiano et al., 2018 ; Lorenz et al., 2019 ; Lucero et al., 2019 ). Both types of training are delivered to small groups of users via videoconferences with healthcare professionals or via written chats or forums (Hopwood et al., 2018 ). Finally, cognitive function and physical health might be self-assessed using specific mobile Apps (Brando et al., 2017 ; Rathnayake et al., 2019 ).

Overall, the literature suggests the need to match aims, interventions, and interfaces. Once the purposes are defined through needs and capacity assessment, interventions obtain better results if they fit with the appropriate interfaces (Ajzen, 1985 ). Informative websites are preferred over handbook instructions and seem to be the best way to provide fast and straightforward resources (Hopwood et al., 2018 ). Differently, videoconferences are the preferable interventions to improve caregivers' emotional well-being and to communicate in small groups of peers either in public forums or through private messaging (Dam et al., 2016 ; Parra-Vidales et al., 2017 ; Waller et al., 2017 ; Hopwood et al., 2018 ). Moreover, peer support seems to entail the best way to improve decision-making processes and increase caregivers' confidence in their choices. Finally, it appears usually more appreciated when it integrates multicomponent programs (Godwin et al., 2013 ; Hopwood et al., 2018 ).

As seminally suggested elsewhere (Moniz-Cook and Manthorpe, 2009 ), even here, the interventions that are capable of combining different modalities lead to better outcomes. The combination of videoconferences with phone calls and/or informative websites produces higher positive effects than those obtained using a singular channel. In particular, positive outcomes emerged related to emotional well-being, self-efficacy and perceived satisfaction, and self-efficacy and perceived satisfaction (Boots et al., 2014 ; Jackson et al., 2016 ; Lucero et al., 2019 ). Indeed, in general, interventions provided positive results. The main benefits regard emotional well-being (depression, anxiety, stress, and burden), learned skills (decision making, knowledge, self-efficacy, and strategies), and social aspects (perceived support and positive aspects related to caregiving, such as bonding with your relative; (McKechnie et al., 2014 ; Dam et al., 2016 ; Egan et al., 2018 ; Ruggiano et al., 2018 ). Moreover, despite the few quantitative analyses and the limits concerning the adopted methodologies, results highlighted the benefits online interventions have for what concerns caregivers' quality of life (Boots et al., 2014 ; Waller et al., 2017 ; Leng et al., 2020 ).

Discussion and Conclusion

The present review analyzes the role of technology in the interventions addressed toward both PWD and their caregivers. The final summary aims to provide tangible support to decision-makers in deciding which ATs may better compensate for the dysfunctionalities featuring many dementia contexts.

The quality of the analyzed literature was high. Both the AMSTAR and the SANRA scores returned adequate standard levels, notwithstanding the reported methodologies' heterogeneous quality.

From our analysis, it emerges that in dementia contexts, the use of ATs is increasing. Such technologies can facilitate daily living, either for what concerns daily activity and the possibility to connect people that are geographically distant. Connections are particularly relevant in the case of difficulties associated with psychological states, personal injuries, and orographic features. In all these cases, technology can compensate for the limitations imposed on traditional human interactions. It represents a useful resource to stay in touch with relatives, friends, and physicians or therapists, too (Novitzky et al., 2015 ; Cheung and Peri, 2020 ).

In this light, ATs can become useful even to face social distancing occurring during further pandemic waves. Monitoring technologies, such as video-cameras or GPS-based systems, meet the visit restrictions and thus contagion by reducing the number of check-ups both in residential settings and PWD's homes (Fleming and Sum, 2014 ; Brando et al., 2017 ; Tyack and Camic, 2017 ; Neubauer et al., 2018 ; Lorenz et al., 2019 ). Simultaneously, ATs can compensate for the distress associated with the resulting isolation through communication tools designed to keep people remotely “in-touch.” Phone-calls, chat interfaces, videoconferences, and remote therapies, for example, can connect family members, physicians/therapists, and communities of peers (Weiner et al., 2011 ; Jelcic et al., 2014 ; Dethlefs et al., 2017 ; Lorenz et al., 2019 ; Cheung and Peri, 2020 ). Moreover, telepresence robots may be useful surrogates during isolation by increasing daily stimulation activities. In the same vein, even multimedia, Apps offering interactive gaming or automatic prompting systems can either stimulate cognitive functions or sustain PWD daily living and instrumental activities (Brando et al., 2017 ; Tyack and Camic, 2017 ; Daly Lynn et al., 2019 ; Moyle et al., 2019 ). However, people with dementia are not the only ones who can take advantage of different technological tools. Remote ATs can involve PWD's caregivers by providing them with several types of supportive programs, which, in turn, emerged to have many positive outcomes. If, on the one hand, the number of online or remote supportive tools targeting PWD are few, they are positively evaluated both by PWD and their caregivers (Weiner et al., 2011 ; Lazar et al., 2014 ; Lorenz et al., 2019 ; Moyle et al., 2019 ). Our analysis also shows some limitations in the existing AT-related literature. The first one is concerned with using heterogeneous methodologies to assess the impact of the use of ATs. Specifically, several devices deliver different types of interventions, the sample size is usually small, research designs barely standardized, and the outcomes were not enough systematized. Unfortunately, such limitations have not improved with time. Both heterogeneity and effect sizes featuring the latest studies showed that technologies need more controlled research to reveal their effectiveness. Furthermore, our analysis shows a possible bias regarding the population defined as the interventions' primary target. For example, many of the interventions monitoring PWD to offering them security services are often described as helpful “for caregivers.” Even though these technologies may also assist the caregiving process, we think that they should be labeled as “for PWD,” as the actual label does not consider functional autonomy levels still active. The security devices can be used autonomously by PWD until their autonomy has not yet been severely compromised. In this vein, Lorenz et al. ( 2019 ) reported a meaningful blog post written by a person with dementia. The post describes how he felt about the transition between the active and passive roles in domestic alarms management. In the first phase of the disease, notifications supported a person's autonomy until he could recognize the different sounds. Later, due to the disease's progression, the person could not understand the source of the sounds anymore. Therefore, when a caregiver's assistance becomes necessary to manage the technological devices, it may be more appropriate to label the technology as “for caregivers”: it cannot support any longer the PWD but, instead, the caregiver.

Besides what was discussed, it is also relevant to mention that the theoretical models underpinning technological offers need improvement. Only the review of Rathnayake et al. ( 2019 ) highlighted the theoretical backgrounds upon which the designing process of the Apps was based. On top of this, just two of the studies reviewed by them reported a theoretical model. This evidence confirms the need to increase the number of studies on technology that bases their hypothesis on theoretical models. Such an improvement would impact the rate of studies reproducibility, and it can also foster the capability of the research to disentangle which factors cause the observed effects (Kennelly, 2011 ). These limitations are associated with two consequences. Firstly, the single outcomes featuring each intervention are hard to disentangle and to generalize. Secondly, there is a significant gap between the theory underpinning the research and the implementation of the devices in everyday life, which is due to a lack of attention toward time-related factors and organizational determinants (Christie et al., 2018 ). Indeed, the inadequate follow-ups and insufficient consideration of the person's ongoing adaptation process provoke an over-time decline in the usage of ATs in the post-trial phases (Christie et al., 2018 ). Finally, the design of interventions should focus more on developing user-friendly technologies that can be personalized and updated by respecting users' evolving needs. Additionally, there is a limited interest in innovation supplied by national and local health organizations, mainly when the elderly are the target of the technology (Christie et al., 2018 ). Hence, it is necessary to regularly update the research to develop interventions able to exploit the maximal potential of modern technologies and supportive organizational plans aimed at overcoming the barriers experienced by healthcare professionals and the devices' final users (Meiland et al., 2017 ).

Limitations

One of the limitations affecting the present work consists of the use of a heterogeneous methodology chosen. Specifically, to timely respond to the pandemic, we primarily decided to include in this work reviews of reviews. As we noticed that no review discussed the recent outbreak, we welcomed new studies reporting how the technology can support both PWD and caregivers. The second main limitation regards the selection criteria since no we did not analyze any gray literature sources. Although such a decision might have prevented additional evidence from emerging, it secured certified standards.

Data Availability Statement

Author contributions.

AP performed the literature search, outlined the results, and drafted the manuscript. RC discussed the search outcomes and supervised the process. IC and MV reviewed the manuscript. GO performed the literature search, discussed and reviewed the results, drafted the document, and managed the operations. All authors contributed to the article and approved the submitted version.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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Critical Writing Program - Shaping Food Taste - Fall 2024: Researching the White Paper

• Getting started
• News and Opinion Sites
• Academic Sources
• Grey Literature
• Substantive News Sources
• What to Do When You Are Stuck
• Understanding a citation
• Examples of Quotation
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• Chicago Manual of Style: Citing Images
• Researching the Op-Ed
• Researching Prospective Employers
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Research the White Paper

Researching the white paper:.

The process of researching and composing a white paper shares some similarities with the kind of research and writing one does for a high school or college research paper. What’s important for writers of white papers to grasp, however, is how much this genre differs from a research paper.  First, the author of a white paper already recognizes that there is a problem to be solved, a decision to be made, and the job of the author is to provide readers with substantive information to help them make some kind of decision--which may include a decision to do more research because major gaps remain. 

Thus, a white paper author would not “brainstorm” a topic. Instead, the white paper author would get busy figuring out how the problem is defined by those who are experiencing it as a problem. Typically that research begins in popular culture--social media, surveys, interviews, newspapers. Once the author has a handle on how the problem is being defined and experienced, its history and its impact, what people in the trenches believe might be the best or worst ways of addressing it, the author then will turn to academic scholarship as well as “grey” literature (more about that later).  Unlike a school research paper, the author does not set out to argue for or against a particular position, and then devote the majority of effort to finding sources to support the selected position.  Instead, the author sets out in good faith to do as much fact-finding as possible, and thus research is likely to present multiple, conflicting, and overlapping perspectives. When people research out of a genuine desire to understand and solve a problem, they listen to every source that may offer helpful information. They will thus have to do much more analysis, synthesis, and sorting of that information, which will often not fall neatly into a “pro” or “con” camp:  Solution A may, for example, solve one part of the problem but exacerbate another part of the problem. Solution C may sound like what everyone wants, but what if it’s built on a set of data that have been criticized by another reliable source?  And so it goes. 

For example, if you are trying to write a white paper on the opioid crisis, you may focus on the value of  providing free, sterilized needles--which do indeed reduce disease, and also provide an opportunity for the health care provider distributing them to offer addiction treatment to the user. However, the free needles are sometimes discarded on the ground, posing a danger to others; or they may be shared; or they may encourage more drug usage. All of those things can be true at once; a reader will want to know about all of these considerations in order to make an informed decision. That is the challenging job of the white paper author.     
 The research you do for your white paper will require that you identify a specific problem, seek popular culture sources to help define the problem, its history, its significance and impact for people affected by it.  You will then delve into academic and grey literature to learn about the way scholars and others with professional expertise answer these same questions. In this way, you will create creating a layered, complex portrait that provides readers with a substantive exploration useful for deliberating and decision-making. You will also likely need to find or create images, including tables, figures, illustrations or photographs, and you will document all of your sources. 

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• Last Updated: Sep 20, 2024 4:43 PM
• URL: https://guides.library.upenn.edu/c.php?g=1426489