Dementia Support Research Articles

'I feel more part of the world': Participatory action research to develop post-diagnostic dementia support.

Many people living with dementia are 'on the margins', not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the 'Beyond the Margins' project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme's principles of providing a safe and a respectful space, and the programme's values of: Everyone who comes already knows things, can learn things and can teach things; Doing things 'with' each other, rather than 'for' or 'to' each other; Personalised goals-led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a 'sandwich', providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement.

The expected role of Dementia Support Doctors in dealing with complex cases of older people with dementia

The present studyinvestigated the roles expected of Dementia Support Doctors (DSDs) in dealing with complex cases. The participants were attendees of the education programs organised by the Center for Promoting Dementia Support and the Medical Center for Dementia at the Tokyo Metropolitan Geriatric Hospital from April 2021 to March 2022. A self-administered postal questionnaire survey was conducted. The questionnaire included items on the basic attributes of the participants, their experiences with the issues associated with complex cases, and role expectations of consulting/collaboration partners when dealing with complex cases. The valid response rate was 49.3%. DSDs were expected by primary physicians, Community General Support Center staff and administrative staff to diagnose dementia and give advice on support strategies for complex cases. Primary physicians further expected them to initiate pharmacotherapy with anti-dementia drugs and address the pharmacotherapy needs for managing Behavioral and Psychological Symptoms of Dementia. It was also found that DSDs' experience with complex cases was comparable to that of the staff at the Medical Centers for Dementia. Of note, DSDs were mentioned less frequently as consulting/collaboration partners than Medical Centers for Dementia and primary physicians. The study showed that DSDs play an important role in dealing with complex cases. The roles of DSDs and ways to collaborate with them need to be communicated through interprofessional education.

Examining Utilization of Formal Supports and Related Impacts on Overall Well-Being Among East Asian American Family Caregivers of Persons With Dementia: A Mixed-Methods Study.

Although East Asian American family caregivers are known to underutilize formal support services, there is a lack of evidence regarding the associations of formal service utilization with caregivers' well-being. This study examined the prevalence of different types of home-and community-based formal service utilization among Korean and Chinese American family caregivers of persons with dementia and how utilization of such services was associated with their well-being. We also explored their overall experience in accessing and utilizing formal dementia support services and programs. We employed a convergent mixed-methods study design. In a convenience sampling method, we recruited 62 family caregivers. Logistic regression and thematic analysis were utilized to analyze data. The results showed in-home services were mostly utilized among family caregivers of these ethnic groups. Out of 9 different support services, those who utilized nutrition programs and case management were more likely to report higher overall well-being. Four themes were developed: (1) awareness of formal support services but uncertainty on how to access them, (2) language barriers imposing additional challenges in accessing formal support services, (3) traveling to access culturally appropriate services, and (4) desire for culturally tailored medical and long-term care services. Findings from this study suggest the importance of case management services to overcome barriers to accessing and utilizing a wide range of formal support services and provision of culturally appropriate food in formal support services to increase East Asian American family caregivers' utilization of long-term care services.

Third sector provision of dementia support in the community: results from a scoping exercise of charity involvement in the UK

Third sector dementia support is characterised by wide variation and a heavy reliance on volunteer engagement. While there has been a growth in the reach and diversity of different schemes, their short-term funding results in a loss of networks, collaborations and local knowledge. This practice paper reflects on strengthening community-based dementia support and care via public and third sector partnerships. National and local data sources could help charities and commissioners begin to identify inequalities of provision.

“I felt like I had been put on the shelf and forgotten about” – lasting lessons about the impact of COVID-19 on people affected by rarer dementias

BackgroundThe public health measures imposed in many countries to contain the spread of COVID-19 resulted in significant suspensions in the provision of support and care for people with dementia. The negative effects of these measures have been extensively reported. However, little is known about the specific impact on people with young onset, non-memory-led and inherited dementias. This group may have experienced different challenges compared to those with late onset dementia given their non-memory phenotypes and younger age. We explored the impact of the first COVID-19 lockdown on people living with familial Alzheimer’s disease, behavioural variant frontotemporal dementia, familial frontotemporal dementia, dementia with Lewy bodies, posterior cortical atrophy and primary progressive aphasia and their carers in the UK and their self-reported strategies for coping.MethodsThis was a mixed methods study. An online survey was administered to people with dementia and family carers recruited via Rare Dementia Support. Free-text responses were analysed using framework analysis to identify key issues and themes.Results184 carers and 24 people with dementia completed the survey. Overall, people with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%), well-being (57%) and changes to medication (26%) during lockdown. Carers reported a reduction in the support they received (55%) which impacted their own mental health negatively. Qualitative analysis of free-text responses shed light on how the disruption to routines, changes to roles and responsibilities, and widespread disconnection from friends, family and health and social care support varied according to phenotype. These impacts were exacerbated by a more general sense that precious time was being lost, given the progressive nature of dementia. Despite significant challenges, respondents demonstrated resilience and resourcefulness in reporting unexpected positives and strategies for adapting to confinement.ConclusionsThis study has highlighted the specific impacts of the COVID-19 restrictions on people with young onset, non-memory-led and inherited dementias, including behavioural variant frontotemporal dementia, primary progressive aphasia and posterior cortical atrophy, and their carers. The specific challenges faced according to diagnosis and the self-reported strategies speak to the importance of – and may inform the development of – tailored support for these underrepresented groups more generally.Visual abstract

Practitioners' ability to remotely develop understanding for personalised care and support planning: a thematic analysis of multiple data sources from the feasibility phase of the Dementia Personalised Care Team (D-PACT) intervention.

Practitioner understanding of patients' preferences, wishes and needs is essential for personalised health care i.e., focusing on 'what matters' to people based on their individual life situation. To develop such an understanding, dementia practitioners need to use communication practices that help people share their experiences, preferences, and priorities. Following the COVID-19 pandemic, dementia support is likely to continue to be delivered both remotely and in-person. This study analysed multiple sources of qualitative data to examine the views of practitioners, people living with dementia and carers, and researchers on how an understanding of what matters to people living with dementia can be developed remotely via telephone and video call. Access to environmental stimuli, the remote use of visual tools, peoples' tendency to downplay or omit details about their troubles and carers' ability to disclose privately were interpreted, through thematic analysis, to be factors affecting how practitioners sought to develop understanding remotely. Cumulatively, findings show that while remote support created unique challenges to practitioners' ability to develop understanding for personalised care, practitioners developed adaptive strategies to overcome some of these challenges. Further research should examine how, when and for whom these adapted practices for remote personalised care work, informing the development of evidence-based guidance and training on how practitioners can remotely develop the understanding required for personalised care.

Cognitive Function Among Rural People in Nineveh: A Cross-Sectional Survey

Background: Early identification of cognitive weakening in previously undetected cases could help deal by starting programs for rehabilitation. Aim: The aim of this survey was to evaluate the prevalence and degree of cognitive impairment among adults of rural area in Nineveh, Iraq. Method: A cross-sectional study with convenient sampling technique was conducted to enroll subjects from a rural area in Nineveh. Cognitive function was examined in all the patients by the Saint Louis University Mental Status (SLUMS) is a screening tool for the cognitive state. A total of 213 agreed to participate in the survey with a mean age of 52.1 ± 11.8 years and higher percentage of participants were with primary level of education 125 (58.7%). Results: The mean score for the cognitive function examination was 18.85 ± 4.55 with significant differences were found between cognitive function and educational level, employment, and monthly income. Cognitive score was negatively correlated with age of participants (r= - 0.128, p value = 0.031). Although it was not significantly associated with level of education but around 43% of the study population suffered from mild cognitive impairment to dementia. Conclusion: The study concludes that there have been strong calls for program from the Ministry of Health to improve dementia care and support for societies with dementia and their occupations that will stay a life of that means and dignity. Efforts to make societies greater cognitively functioned, as well as, actively attractive patients will improve cost, the sustainable, treatment and care methods for diseases and quality of life.

A comparison of dementia care and policy in five Asian regions: A literature review

Purpose: This review was comprised of an integrative analysis of the literature on the current state of dementia and related issues in Hong Kong, Japan, South Korea, Taiwan, and Thailand. Methods: Published reports and policy documents from MEDLINE, CINAHL, PubMed, and each government’s database were used in this review. Results: All five Asian regions are projected to become super-aged societies within 12 years, and the number of people with dementia has increased in these regions. All five regions have established dementia policies, which include improving dementia awareness, risk reduction, early diagnosis, and support programs for caregivers. However, there is a lack of information systems for sharing dementia data and research funding for dementia. Conclusion: It is necessary to establish a dementia committee for Asian regions to actively address the challenges posed by the upcoming super-aged societies and to complement the insufficient research. This review provides future directions for dealing with diverse dementia-related issues and can serve as the basis for forming an Asian dementia committee.

Doing relationship-centered dementia care: Learning from each other for better dementia support

Doing relationship-centered dementia care: Learning from each other for better dementia support

Accessing Dementia Care in Brazil: An Analysis of Case Vignettes.

Despite the rapid increase in the number of people living with dementia in Brazil, dementia care is limited. This study describes how people living with dementia and their carers access care, treatment, and support, and identifies what characteristics are likely to enable or prevent access. We created 10 vignettes to illustrate fictitious but realistic scenarios involving people living with dementia in Brazil. The vignettes explore a combination of socioeconomic and demographic variables. They were completed using an in-depth desk review of the dementia care landscape in Brazil; a Strengths, Opportunities, Weaknesses, and Threats (SWOT) analysis of the desk review; and expert knowledge. The analysis focused on identifying common sources of service provision, barriers of access to care and support, and specific issues experienced by some population groups. Access to a dementia diagnosis, care, and support for people living with dementia in Brazil is limited. Demographic and socio-economic circumstances play a role in determining the type of services to which a person might have access. Poor knowledge about dementia, lack of capacity in the health system, and lack of formal long-term care support are among the identified barriers to accessing timely diagnosis, care, and support in the country. Understanding the barriers and facilitators of access to diagnosis, treatment, and support for people with dementia and families with different demographic and socioeconomic characteristics is crucial for designing dementia policies that are context-specific and responsive to the care needs of different socioeconomic groups in Brazil.

Dying with behavioral and psychological symptoms of dementia in Australian nursing homes: a retrospective case-control study.

To identify predictors of mortality in people with active and challenging behavioral and psychological symptoms of dementia (BPSD). A retrospective case-control study was designed to compare those referred to Dementia Support Australia (DSA) who died in the 12 months to November 2016, with an equal number of controls who did not die. An audit tool was designed after literature review and expert opinion from the service. Odds ratio calculations and the Mann-Whitney U test were used to assess for difference. Residents of Australian residential aged care facilities with BPSD referred to the DSA service. Of 476 patients referred to DSA during the study period, 44 died. 44 controls were randomly selected from those remaining matched for age and sex. Significant differences included higher rates of benzodiazepine use, drowsiness, delirium, reduced oral intake and discussions about goals of care in those who died. Those who died were referred to the service for a shorter period and had more frequent contact between DSA and nurses at the nursing homes. Increase in opioid use and loss of skin integrity in those who died approached significance. The overall end of life course demonstrated a complex set of needs with frequent delirium, pain and frailty. Further study is required to determine the optimal care for those with BPSD at the end of their lives. This study would indicate complex end of life care needs and point to a role for palliative care support.

Longitudinal realist evaluation of the Dementia PersonAlised Care Team (D-PACT) intervention: protocol.

Different dementia support roles exist but evidence is lacking on which aspects are best, for whom, and in what circumstances, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT) developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. Phase 2 of the programme aims to 1) refine the programme theory on how, when, and for whom the intervention works; and 2) evaluate its value and impact. A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across South West and North West England where low-income or ethnic minority populations (for example, South Asian) are represented. Design was informed by patient, public, and professional stakeholder input and phase 1 findings. High-volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers, and practitioners. Analyses will comprise the following: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4a) health economic analysis examining costs of delivery; and 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation, and stakeholder co-analysis. The realist evaluation will describe how, why, and for whom the intervention does or does not lead to change over time. It will also demonstrate how a non-randomised design can be more appropriate for complex interventions with similar questions or populations.

Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

Depression and Anxiety in Older Adults with Dementia During the COVID-19 Pandemic.

This study examined the longitudinal association between dementia, activity participation, the coronavirus disease 2019 pandemic period, and 1-year mental health changes. We obtained data from the National Health and Aging Trends Study in the United States. We included 4,548 older adult participants of two or more survey rounds between 2018 and 2021. We identified baseline dementia status, and assessed depressive symptoms and anxiety at baseline and follow-up. Dementia and poor activity participation were independently associated with an increased prevalence of depressive symptoms and anxiety. Dementia care and support should address emotional and social needs under continued public health restrictions.

Understanding the Experiences of Post-Diagnostic Dementia Support for South Asians Living In England: The Need for Co-Production

Background: The increase in the numbers of South Asians in the United Kingdom (UK) is likely to lead to an increased need for dementia services yet; they are currently under-represented in dementia services. Furthermore, little is known about the prevalence, experience and treatment of dementia in the UK South Asian population, including their experiences of post-diagnostic support. Consequently, a project was commissioned by Alzheimer’s Society in the UK to gather insight into the experiences of post-diagnostic dementia support for the South Asian community in England to identify whether their post-diagnostic support needs were being met and what they needed from post-diagnostic support services. Methodology/Methods: As this project sought to understand experiences, a qualitative case-study approach was adopted. Twelve South Asian carers of a person with dementia and one South Asian person living with dementia took part in an on-line in-depth, topic-guided conversation. All conversations were audio recorded with consent and analysed using a thematic analysis. Findings: Analysis revealed that the South Asian community are doubly affected by dementia in relation to post-diagnostic support because 1) they received very little post-diagnostic support and 2) even when they did, it wasn’t culturally appropriate and therefore ineffective. Essentially, the lack of culturally inclusive care compounds the lack of access further. Consequently, people discussed current gaps in service provision, making recommendations that will result in better support, and more positive experiences for South Asians when diagnosed with dementia in England. In order to achieve this, South Asians in need of dementia support should be involved in the planning, development and delivery of post-diagnostic support services. Conclusions: This paper discusses findings that highlight the importance and benefits of co-production whereby people who use services and carers work with professionals in equal partnerships towards shared goals.

205 Perceived Needs and Access to Community-based Dementia Resources in the Rural Deep South

OBJECTIVES/GOALS: The goal of this project is to investigate dementia caregivers’ needs, barriers to access, and current utilization of community-based dementia-care services in Alabama, and how these vary across rural/urban settings and racial groups. METHODS/STUDY POPULATION: We partnered with Marketry Inc. to recruit and conduct interviews among three groups: dementia caregivers, healthcare providers, and aging services representatives. We recruited caregivers from dementia support groups and aging services in 2 rural and 2 urban Alabama counties. Purposive and snowball sampling was used to recruit healthcare providers and aging services representatives. Interviews were conducted by trained Marketry staff, recorded, and transcribed verbatim. Rapid content analysis was conducted by three investigators using the Social Determinants of Health as a coding framework to assess patterns in barriers and facilitators to utilizing community-based dementia resources. RESULTS/ANTICIPATED RESULTS: We interviewed 5 healthcare providers, 32 caregivers, and 15 aging services representatives. Providers thought that the process of memory loss care is not streamlined and they lack key information necessary to fulfill their role. Caregivers expressed a need for more dementia education, social connection, and access to financial resources. Aging services agencies need more funding and volunteers to sustain community-based dementia services. Dementia resources, like memory clinics, were more available in urban than in rural counties. African-American caregivers mentioned a reluctance to accept outside help for taking care of their loved ones with dementia, potentially due to distrust. DISCUSSION/SIGNIFICANCE: There is a need for more accessible dementia services in rural AL and a need to build service trust and familiarity, especially among African-American caregivers. Future research should develop tools for providers and caregivers to start conversations and increase awareness of service availability.

Beliefs around help-Seeking and Support for Dementia in the Australian Arabic Speaking Community.

The number of people with dementia in multicultural Australia is rapidly increasing. Despite its culturally diverse population, there is limited research about how people from ethnic minority groups understand and approach help-seeking and support for dementia. The aim of this study is to understand the perceptions of dementia symptoms, help-seeking and support in the Australian Arabic-speaking community. This study used a cross-sectional qualitative research design. Individual, semi-structured interviews using projective stimulus techniques were used. Participants were three Arabic-speaking people aged over 70 who were experiencing cognitive changes or dementia symptoms, six carers, and five health or social care practitioners experienced in working with Arab-Australians. Phone or video chat interviews were conducted in either Arabic or English. Interviews were audiotaped, translated when needed, transcribed verbatim and inductive thematic analysis was undertaken. Seven themes were identified. Participants described dementia as relating to symptoms of confusion and memory loss. Carers and older people believe that when older people are experiencing these cognitive symptoms, they must be cared for primarily by ensuring their happiness and comfort. Barriers to help-seeking and support included a lack of help-seeking due to cultural norms of family orientated care, families are unsure of where to seek help and fear of community judgement. Two ways to facilitate help-seeking and support were to build trust through culturally appropriate support and to educate the community. Family, trust and community were identified as central pillars of the Australian-Arabic-speaking community. There is a need to increase dementia literacy in this community particularly around help-seeking and decreasing stigma. Education should be promoted by trusted community members and religious leaders. As the first point of professional contact, general practitioners need to be upskilled to support Arabic-speaking Australians around dementia.

Effectiveness of interventions on feeding difficulties among people with dementia: A systematic review and meta-analysis.

This systematic review and meta-analysis aimed to examine non-pharmacological interventions for helping people with dementia who experience feeding difficulties in order to improve their nutritional status. The articles were searched using PsycINFO, Medline, PubMed, CINAHL and Cochrane. Two independent investigators critically appraised eligible studies. The PRISMA guidelines and checklist were used. The possibility of risk of bias was assessed using a tool to assess the quality of randomised control trials (RCT) and non-RCT studies. A narrative synthesis was conducted as a method of synthesis. The Cochrane Review Manager (RevMan 5.4) was used for meta-analysis. The systematic review and meta-analysis included seven publications. Six interventions were identified and categorised as: eating ability training for people with dementia, staff training and feeding assistance and support. The meta-analysis found evidence of the effect of eating ability training on feeding difficulty, quantified by the Edinburgh Feeding Evaluation in Dementia scale (EdFED) with a weighted mean difference of -1.36 (95% confidence interval: -1.84 to -0.89, p < 0.001) and on self-feeding time. A spaced retrieval intervention showed a positive effect on EdFED. The systematic review discovered that while feeding assistance had a positive effect on feeding difficulty, staff training had no effect. According to the meta-analysis, these interventions had no effect on improving the nutritional status of people with dementia. None of the included RCTs met the Cochrane risk-of-bias criteria for randomised trials. This review found that direct training for people with dementia and indirect feeding support from care staff resulted in fewer mealtime difficulties. More RCT studies are needed to determine the efficacy of such interventions.

Living well with dementia

The number of people living with dementia (PLWD) in the UK is projected to increase rapidly. Much of the contact PLWD and their carers have with the health service is through primary care. The primary care team plays an important role helping people to ‘live well with dementia’. ‘Living well with dementia’ will mean something different for everyone; a holistic, person-centred view of the concept is needed. Important aspects this concept include remaining physically/socially active, understanding the diagnosis and being involved in care decisions. Safe prescribing and regular, high-quality reviews are markers of good dementia care and support people to ‘live well’. ‘Living well’ also incorporates avoidance of adverse health outcomes, including hospitalisation, falls and delirium. As dementia prevalence increases, many more people will be living with the condition, or caring for someone with it. Supporting people with dementia and their carers to ‘live well’ needs to be a primary care priority. This article discusses ways to facilitate achievement of better support for patients living with dementia.

Jordanian Community People's Knowledge of and Attitudes Toward Dementia.

Limited research exists on the knowledge and attitudes of Jordanian community residents toward people with dementia (PwD). As the prevalence of dementia is anticipated to increase, there is a critical need for informed knowledge and positive attitudes toward dementia in the Jordanian community. This study aimed to evaluate people's knowledge of and attitudes toward PwD and identify the predictors of dementia knowledge and attitudes. The study employed a cross-sectional research design and utilized a self-administered questionnaire as the primary data collection method. The study employed the Alzheimer's Disease Knowledge Scale (ADKS) to evaluate the knowledge of the participants, and the Dementia Attitudes Scale (DAS) was utilized to assess their attitudes in the Jordanian community. Multiple regression analysis was performed to find relevant factors influencing knowledge of and attitude toward dementia. The study's 346 participants revealed limited knowledge about dementia, with an average ADKS score of 17.21 out of 30. However, participants showed a positive attitude toward dementia, as evidenced by a mean DAS score of 88 out of 140. Statistical analysis demonstrated significantly higher knowledge scores among employed individuals (P < .05), while females exhibited significantly higher attitude scores (P < .05). Participants with experience in geriatric clinical practice, dementia education or training, informal caregiving experience, and a desire to learn more about dementia also exhibited significantly higher knowledge and attitude scores (P < .05). The study offers preliminary insights into the knowledge and attitudes toward dementia in the Jordanian population. The findings underscore the importance of continuing education and training to increase knowledge and understanding of dementia. Improving dementia care and support in Jordan requires enhancing knowledge and attitudes toward dementia. The study findings were presented to policymakers, with recommendations for strategic planning and the development of awareness programs. Future research can build upon these findings and promote evidence-based practices in dementia care and community awareness programs.