Dementia In Community Research Articles

Family function, psychological distress and burden in informal caregivers of people with dementia

Abstract Background Dementia presents a public health priority due to its high global prevalence, mortality, economic cost, and caregiver burden (CB). Dementia care can be stressful and may negatively influence the health of informal caregivers. This cross-sectional study aimed to identify psychological and social factors associated with subjective CB in informal home care providers of people with dementia (PwD), controlling for sociodemographic, clinical, and care-related variables. Methods We included 115 informal caregivers of PwD from community settings (mean age: 54.0±12.4 years; 81.7% women). Participants fulfilled the Zarit Burden Interview (ZBI-12), the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), the Family APGAR, and the short IQCODE used to assess dementia severity. Multiple linear analyses were used to analyse the data. Results The mean caregiving duration was 4.8±4.8 years, and 55.7% of informal caregivers extend care for >40 hours/week. We found that a total of 52.5 % of informal caregivers experienced a high CB (ZBI-12 cut-off score: 17). Univariate analyses showed an association between depression (β = 0.36; p < 0.001), anxiety (β = 0.52; p < 0.001), family dysfunction (β = 0.36; p < 0.001), and CB. Regression analyses showed that CB was the most strongly associated with anxiety (β = 0.51; p < 0.001). This association weakened (0.47; p < 0.01) when family function was added to the final model (β=-0.22; p < 0.05). The final model explained 23.5% of the variance in CB. No associations between the caregiver's age, sex, caregiving duration, the extent of care per day, use of community care, dementia severity, and depression were identified. Conclusions Long-term care for people living with dementia can be very demanding. Thus, the implementation of tailored interventions to enhance family function and diminish psychological distress can mitigate level of caregiver burden. [Grant support: APVV-22-0587]. Key messages • Dementia caregiving is a global public health priority. • The caregiver’s burden and distress can be alleviated by the interventions focusing on family dysfunction.

Understanding dementia in minority ethnic communities: The perspectives of key stakeholders interviewed as part of the IDEAL programme.

Future populations of older adults in the UK, those aged 65+, will demonstrate increased diversity in terms of their ethnic identity resultant from the ageing of the post-war migrants from India, Pakistan, Bangladesh, and the Caribbean. As a consequence, there will be an increase in the numbers of older adults from these communities living with age-related chronic diseases such as dementia. In response to these demographic changes, we need to develop a research, policy and practice agenda that is inclusive and provides evidence for the development of culturally diverse and effective models of service delivery. This requires engagement with three key stakeholder groups: (a) people with dementia; (b) their carers; and (c) the wider community. As part of the IDEAL research programme on living well with dementia, we undertook semi-structured interviews with twelve community leaders, defined as known and trusted individuals active in their respective communities, and six community members (two people living with dementia and four carers). We explored their understandings, experiences, and views of about dementia. Our analysis identified two overarching themes. The migrant lifecourse highlighted issues of not belonging, discrimination and racism. This framed our second theme, the cultural context of dementia, which addressed dementia knowledge and attitudes, service provision and service access, and how being part of a minority ethnic community made a difference to these experiences. Our study highlights how lifecourse experiences of negative hostile social and policy environments and services can be profound and long-lasting and provide a prism through which accessing dementia care is experienced. Our findings argue for the inclusion of diverse views and lifecourse experiences within the context of developing a dementia strategy for research, policy and practice that is appropriate for a multicultural and heterogenous society.

Preventing Emergency Department Visits: Success Of A Community Dementia Care Model

Abstract Background Advanced dementia care in the community is an extremely complex task. NICE guidelines 2021 suggested that a gap in care was evident bridging between clinic attendance and end of life care. Secondary to a required need- a new advanced dementia care model was created in 2021.This was co-developed by an ANP with a specialist interest in gerontology, an integrated care team for older persons (ICPOP) consultant and palliative care in the community. Joint governance remains to this day. My aim is to review unexpected emergency department (ED) attendances of patients accepted to this pathway. Methods Patient records were reviewed of all cases accepted for review and managed under this model of care, time frame Jan 2023- May-2024. All patients > 65. Outcomes of management interventions were assessed. Those found to have an ED attendance during their time engaging with this model of care had closer review of their notes to assess reason why. Results 81 patients. Of which 75% were female. Average age – 89. Of these 48% died at home and are 37% still alive. Of the 81 patients only 5 (6%) had ED attendances. Of these 5 patients - 3 had unexpected traumatic falls- 2 resulting in hip fracture and 1 in humeral fracture. 2 were admitted with worsening delirium. Conclusion The advanced dementia care model has proved very successful in preventing ED attendances prior to direct end of life care engagement. Of those who were admitted – fractures appropriately warrant admission and the remaining 2 cases, had families who were resistant to accepting overall aims of treatment. This interdisciplinary model of care saves bed days. Expanding this care model further to ensure appropriate management of complex dementia cases is maintained in the community would further reduce hospital overcrowding and grant many patient and family wishes.

A Patient and Public Engagement Project to Inform Dementia Care in a UK Hospital Trust.

The increasing prevalence of dementia in the United Kingdom presents significant challenges for healthcare, with projections estimating over a million affected individuals by 2025, costing the NHS £6.3 billion annually. Hospital admissions among dementia patients are common, occupying about 25% of UK hospital beds and leading to prolonged stays and diminished health outcomes. This paper presents the opening stages, part of a larger project where Patient and Public Involvement and Engagement (PPIE) was employed to understand and navigate what it means for hospital care for a person living with dementia. To understand hospital care for dementia patients, focus groups were conducted through dementia cafés in Essex and Suffolk from February to July 2023 engaging patients, carers and family members. Recognised processes for reporting PPIE and thematic analysis were used and identified six themes and 21 subthemes regarding hospital care: individualised care, role of carers, basic care, interpersonal communication, information sharing and staffing. The results from the PPIE will be used to inform and work with stakeholders through the next phases of the project, which involves examining care processes in the hospital, identifying touchpoints and evaluating these areas. The project continues to be informed by stakeholders including people living with dementia, carers and staff. Additionally, the results may inform other service providers for care enhancements, processes and delivery. Moving forward, the study emphasises the importance of building collaborative relationships with stakeholders involved in dementia care. Additionally, it provides insights to focus areas that are fundamental for acute care organisations when delivering care to people living with dementia. By incorporating insights from PPIE, this project seeks to identify inequalities in dementia care services, improve hospital care for people living with dementia, fostering a more inclusive and supportive healthcare environment. The purpose of the study was to explore the most important issues around hospital care for people with dementia, their carers and families. Persons living with dementia, carers and family members were involved in the study through community dementia cafés and recruited to take part in focus groups to discuss hospital care for patients with dementia. The design of questions and materials for the discussions was developed through consultation with the university department's service user lead and dementia specialist and reviewed by a service user member living with dementia. A pilot focus group was conducted with a group of carers. We worked with the dementia café managers to coordinate recruitment and a suitable environment to run the focus groups. Not applicable.

Dementia awareness raising forum: Improving attitudes towards people living with dementia.

Stigma surrounding dementia is a significant issue affecting individuals and communities leading to discrimination towards those living with the condition. However, the changing paradigm in dementia support to living well with dementia can reduce this stigma and improve community attitudes. A community initiative aimed to address this evaluated the impact of a two-hour education forum involving 92 community members. Presentations from experts, including a person with dementia, addressed dementia-related human rights issues and initiatives to live well with dementia. Attendees completed the new Dementia Community Attitudes Questionnaire (DCAQ) aligned with the evolving paradigm of living well with dementia before and after the forum. Participants with prior dementia education had higher initial scores while those without education showed more significant improvements. Almost all DCAQ items showed post-forum score improvements. This community Dementia Awareness Raising Forum provided an opportunity for people to come together and initiate conversations around dementia resulting in more positive community attitudes.

Preliminary study of the effect of the web application on caregiver burden in dementia and behavioural and psychological symptoms of dementia.

This study aimed to investigate if our web application could be a viable intervention for providing caregivers with information on resilient coping strategies for the reduction of their burden, thereby leading to the alleviation of behavioural and psychological symptoms of dementia (BPSD). We recruited outpatients with dementia and informal caregiver dyads at Nagoya University Hospital from April 2022 to October 2022. The caregivers were asked to have the web application installed on their smartphones during the study period and answer the following two self-administered questionnaires once a month for 3 months: (a) Abe's BPSD Score (ABS), which assesses BPSD, and (b) the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI) score, which measures caregiver burden. Thirteen patients and informal caregiver dyads were enrolled in this study. The caregivers exchanged information on the care of patients with dementia in the virtual community using the web application during the study period. Upon entry, J-ZBI scores were correlated with ABSs (r = 0.65). Linear mixed-effects model revealed the average J-ZBI scores decreased over time with significance (p = 0.013), however, the average ABSs did not change during the study period. This is the first study to show that our web application reduces caregiver burden. However, to confirm the efficacy of our web application, further investigations are required.

A reflection on nurturing spirituality and creativity in those living with dementia

ABSTRACT This opinion piece focuses on an award-winning, evidence-based, intergenerational art program Opening Minds through Art, which pairs volunteers with people living with dementia in long-term care communities. Research on this program shows the benefit for both individuals living with dementia and those who volunteer. For both the artist and volunteer, spiritual connections are created and nurtured through the process of creating art and conversation. The goal of this piece is to showcase the creative and spiritual capacity of persons living with dementia and provide a new perspective on engaging art activities appropriate for this population.

Association Between the Average Number of In-Network Hospitals and Medical Counseling for Cognitive Impairment in South Korea

ObjectivesMild cognitive impairment, a pressing concern in the face of a rapidly growing global older adult population, necessitates effective management strategies focused on sustained symptom relief and preventing deterioration. Community Dementia Care Centers, in partnership with in-network hospitals, aim to provide support for preventing mild cognitive impairment and dementia. Medical counseling, influenced by in-network hospitals, is crucial for tailoring interventions to the cognitive abilities and specific needs of each older adult, protecting against dementia. Disparities in the number of in-network hospitals and healthcare infrastructure can contribute to uneven access to dementia care, thereby creating health inequities. DesignCross-sectional study. Setting and ParticipantsUsing data from the Korea Community Health Survey (2018–2019), this study focused on South Korean individuals aged 60 and older in 17 metropolitan areas and provinces. MethodsA multiple regression analysis was used to examine the relationship between the average number of in-network hospitals and medical counseling experience, considering sociodemographic factors and related variables. ResultsAreas with a higher average number of in-network hospitals exhibited increased medical counseling experiences. Significantly higher odds for medical counseling experience were observed in regions with “more than 5 hospitals” (1.36; 95% CI, 1.20–1.54; P = .000) than those with “3 or fewer hospitals.” Conclusions and ImplicationsThis study underscores the importance of infrastructure, particularly collaborative hospitals that support Community Dementia Care Centers, in influencing individual dementia management and prevention. These findings highlight the significance of dementia prevention and management infrastructures, emphasizing the need for practical assistance, particularly in regions crucial for achieving health equity.

Strategic and operational issues in sustaining community-based dementia support groups: the Get Real with Meeting Centres realist evaluation part 2

Objectives Support for people with dementia in their communities is neither robust nor consistent in the UK, often bolstered by third sector/grass-roots initiatives facing formidable challenges in sustaining long-term. The Get Real with Meeting Centres project explored factors involved in sustaining one such form of community-based support. This is the second of two linked articles outlining learning from this realist evaluation of Meeting Centres (MCs) for people with dementia and carers, which focusses on findings regarding their operational and strategic running. Method Semi-structured interviews and focus group discussions were conducted with 77 participants across three MC sites in England and Wales, including people living with dementia, informal carers, staff, volunteers, trustees, and supporting professionals/practitioners. Data were themed, then analysed using soft systems methodology and realist logic of analysis. Results Forty-two ‘context-mechanism-outcome’ statements were generated, explaining how background circumstances might trigger responses/processes to produce wanted or unwanted outcomes regarding three key areas for MC sustainability: External relationships and collaboration; Internal relationships and practices; and Finances and funding. Conclusion Collaboration is essential to sustaining community-based initiatives such as MCs, particularly between local community and regional level. MCs need to be vigilant in mitigating pressures that create ‘mission drift’, as targeting a gap in the care pathway and maintaining a person-centred ethos are central to MCs’ appeal. Stable, ongoing funding is needed for stable, ongoing community dementia support. More formal recognition of the value of social model community-based initiatives, helped by improved data collection, would encourage more robust and consistent community dementia support.

Using Smart Wearable Devices for Supporting Patients Affected by Dementia in Rural Areas of Calabria

The improvement of health and social care needs the introduction of shared solution at transnational level. The SI4CARE (Social Inno- vation for Integrated Health Care) project is a transnational initiative within the Adriatic-Ionian regions aiming to develop strategies to improve the current status of health and social care. The project member Municipality of Miglierina, a small rural town in Calabria, is developing a pilot action related to the use of wearable device for monitoring people affected by dementia together with the project partner Ra.Gi.. Ra.Gi. is a non-profit organization dedicated to assisting people with dementia in day care centers and so-called dementia-friendly communities. The pilot is based on the use of smart wearable devices to monitor these patients during their daily lifetime. This paper focuses on the design and implementation of the system discussing the proposed application, the strengths and weaknesses. We report results from a pilot experiment showing the effectiveness of this approach. Finally, the possibility of extending the experiment to the other Adriatic-Ionian region is presented.

A narrative review of community-based dementia care in India: experiences, challenges, and policy initiatives.

India is facing a significant increase in the aging population who are at risk for dementia. This review evaluates recent literature on community-based care, focusing on caregiver experiences, challenges and policy initiatives. Dementia care in India is traditionally provided by family members who take on the role of caregivers. Studies on caregiver experiences have reflected high caregiving burden and related impact on their mental health. During the pandemic, caregivers experienced several unprecedented challenges in providing care, emphasizing the need for more research on community-based dementia care across the country. Telehealth and online caregiver training were identified as viable alternatives to support community dementia care. However, it may not be a feasible mode of delivery suitable across the Indian context, underscoring the need for culturally relevant and acceptable interventions. India is currently undertaking concerted policy efforts for dementia care through multiple initiatives like the National Program for Healthcare of the Elderly, the Mental Healthcare Act, and initiatives like the Atal Vayo Abhyuday Yojna. These initiatives aim to address the healthcare requirements of the elderly; nevertheless, a comprehensive evaluation of their impact is yet to be discerned. There is a need for comprehensive research, to inform evidence-based policy and improve dementia care systems in India. Addressing gaps in existing dementia care capacities and healthcare initiatives, along with tailoring interventions to India's diverse contexts are critical for effective community care for dementia.

Initial evaluation of a technologyenabled change in delivery of the dementia service during COVID-19 in North Warwickshire.

Remote monitoring technologies show potential to help health professionals deliver preventative interventions which can avoid hospital admissions and allow patients to remain in a home setting. To assess whether an Internet of Things (IoT) driven remote monitoring technology, used in the care pathway of community dementia patients in North Warwickshire improved access to care for patients and cost effectiveness. Patient level changes to anonymised retrospective healthcare utilisation data were analysed alongside costs. Urgent care decreased following use of an IoT driven remote monitoring technology; one preventative intervention avoided an average of three urgent interventions. A Chi-Square test showing this change as significant. Estimates show annualised service activity avoidance of £201,583 for the cohort; £8764 per patient. IoT driven remote monitoring had a positive impact on health utilisation and cost avoidance. Future expansion of the cohort will allow for validation of the results and consider the impact of the technology on patient health outcomes and staff workflows.

Community screening for dementia among older adults in China: a machine learning-based strategy

BackgroundDementia is a leading cause of disability in people older than 65 years worldwide. However, diagnosing dementia in its earliest symptomatic stages remains challenging. This study combined specific questions from the AD8 scale with comprehensive health-related characteristics, and used machine learning (ML) to construct diagnostic models of cognitive impairment (CI).MethodsThe study was based on the Shenzhen Healthy Ageing Research (SHARE) project, and we recruited 823 participants aged 65 years and older, who completed a comprehensive health assessment and cognitive function assessments. Permutation importance was used to select features. Five ML models using BalanceCascade were applied to predict CI: a support vector machine (SVM), multilayer perceptron (MLP), AdaBoost, gradient boosting decision tree (GBDT), and logistic regression (LR). An AD8 score ≥ 2 was used to define CI as a baseline. SHapley Additive exPlanations (SHAP) values were used to interpret the results of ML models.ResultsThe first and sixth items of AD8, platelets, waist circumference, body mass index, carcinoembryonic antigens, age, serum uric acid, white blood cells, abnormal electrocardiogram, heart rate, and sex were selected as predictive features. Compared to the baseline (AUC = 0.65), the MLP showed the highest performance (AUC: 0.83 ± 0.04), followed by AdaBoost (AUC: 0.80 ± 0.04), SVM (AUC: 0.78 ± 0.04), GBDT (0.76 ± 0.04). Furthermore, the accuracy, sensitivity and specificity of four ML models were higher than the baseline. SHAP summary plots based on MLP showed the most influential feature on model decision for positive CI prediction was female sex, followed by older age and lower waist circumference.ConclusionsThe diagnostic models of CI applying ML, especially the MLP, were substantially more effective than the traditional AD8 scale with a score of ≥ 2 points. Our findings may provide new ideas for community dementia screening and to promote such screening while minimizing medical and health resources.

Role of Central and Peripheral Physiological Markers in Understanding and Monitoring the Clinical Illness in Dementia

Patients with Alzheimer's dementia are known to have electrophysiological abnormalities such as increased slow wave power of resting electroencephalography (EEG), cortical excitability as detected using EEG epileptiform and epileptic activity, and deficits in cortical plasticity detected using brain stimulation combined with EEG. Understanding these neurophysiological abnormalities is important to improve our understanding of the mechanisms leading to brain dysfunction thus leading to the development of novel treatment interventions. Further, EEG is a non-invasive, low-cost, and portable technique that is widely available and can become an important tool in monitoring illness and response to treatment. To further improve objective measures to detect and monitor clinical symptoms of dementia, recently, there has been an increased interest in the development of peripheral physiological markers such as motor activity, skin conductance and temperature, and heart rate variability. These markers can be recorded using wearable devices and have shown usefulness in monitoring neuropsychiatric symptoms of dementia. Further development of these markers can improve clinical care by improving objective assessment of clinical profiles of persons with dementia living in the community or those admitted to hospitals and can help individualize care. In this session, we will first review novel findings from studies using EEG to assess central neurophysiological markers, and then discuss the role of peripheral physiological markers in the detection and monitoring of clinical symptoms of dementia in community and dementia care units.These talks will be followed by a discussion about the relevance of the central and peripheral physiological markers (biometrics) in dementia.

Prevalence and correlates of depression and anxiety symptoms among older adults in Shenzhen, China: a cross-sectional population-based study

ObjectivesTo investigate the prevalence of depression and anxiety symptoms among older adults in an urban district in China, as well as their associated factors.DesignCross-sectional study.SettingGeneral communities in Shenzhen, Guangdong, China.ParticipantsA...

Validity, feasibility, and effectiveness of a voice-recognition based digital cognitive screener for dementia and mild cognitive impairment in community-dwelling older Chinese adults: A large-scale implementation study.

We investigated the validity, feasibility, and effectiveness of a voice recognition-based digital cognitive screener (DCS), for detecting dementia and mild cognitive impairment (MCI) in a large-scale community of elderly participants. Eligible participants completed demographic, cognitive, functional assessments and the DCS. Neuropsychological tests were used to assess domain-specific and global cognition, while the diagnosis of MCI and dementia relied on the Clinical Dementia Rating Scale. Among the11,186 participants, the DCS showed high completion rates (97.5%) and a short administration time (5.9 min) across gender, age, and education groups. The DCS demonstrated areas under the receiver operating characteristics curve (AUCs) of 0.95 and 0.83 for dementia and MCI detection, respectively, among 328 participants in the validation phase. Furthermore, the DCS resulted in time savings of 16.2% to 36.0% compared to the Mini-Mental State Examination (MMSE) and Montral Cognitive Assessment (MoCA). This study suggests that the DCS is an effective and efficient tool for dementia and MCI case-finding in large-scale cognitive screening. To our best knowledge, this is the first cognitive screening tool based on voice recognition and utilizing conversational AI that has been assessed in a large population of Chinese community-dwelling elderly. With the upgrading of a new multimodal understanding model, the DCS can accurately assess participants' responses, including different Chinese dialects, and provide automatic scores. The DCS not only exhibited good discriminant ability in detecting dementia and MCI cases, it also demonstrated a high completion rate and efficient administration regardless of gender, age, and education differences. The DCS is economically efficient, scalable, and had a better screening efficacy compared to the MMSE or MoCA, for wider implementation.

Understanding and Awareness of Dementia in the Pakistani-Origin Community of Stoke-on-Trent, UK: A Scenario-Based Interview Study.

The aim of this project was to explore the understanding and awareness of dementia in the Pakistani-origin community in a deprived urban region of the UK. The study was unique in accessing and interviewing Pothwari speakers, some of whom could not read or understand spoken English. Data generated from an earlier study were used to construct five scenarios, which were used as the basis for face-to-face semi-structured interviews with 11 male and female participants from the Pakistani-origin community spanning two generations. Braun and Clarke's six phases of thematic analysis were used to analyse the data to answer the research questions. Themes constructed from these interviews indicated a lack of awareness and understanding of dementia, a range of attitudes and assumptions, reluctance to seek external support, and a significant role for the cultural background in shaping the individuals' responses. The study found that poor understanding, cultural differences, and language issues presented barriers to accessing services in the British Pakistani community, particularly among those who had been born in Pakistan and/or spoke Pothwari in preference to English. Services and information may need to be offered by Pothwari speakers in order to reach this neglected sector of the population.

코로나 팬데믹 이후 치매 노인환자 비공식 가족돌봄의 실태와 영향 요인

Objective : This study aimed to examine the state and changes in caregiving for the older patients with dementia in the community after the pandemic and to identify factors affecting informal family caregiving.
 Methods : Using Korean Longitudinal Study of Aging (KLoSA) data from its 7th and 8th waves, 1,305 diagnosed or suspected dementia cases were examined. Multiple linear regression analysis explored factors influencing total care time.
 Results : Post-pandemic, family size significantly increased, with a decline in older people living alone or as couples and a notable rise in older couples living with children or other family. Despite this, total care time decreased from 6.17 to 5.08 hours. Care time for the older patients with dementia correlated significantly with daily living dependence, depression, and household income. Conclusion : The study emphasizes tailored programs, aligning with caregiver and household traits, to address
 the needs of local community dementia patients effectively.

Dementia Meeting Centres: People Affected by Dementia Take the Lead

Meeting Centres (MC) are a flexible, hyper-local model for dementia post-diagnostic support, which create engaging, enabling, and empowering spaces for families affected by dementia.
 MCs offer ongoing warm and friendly expert assistance, including peer support, for people and families affected by dementia. The model originated in the Netherlands, led by Professor Rose-Marie Dröes at the Amsterdam University Medical Centers. Meeting Centres UK was established in 2018 and led by the Association for Dementia Studies (ADS), University of Worcester. In 2019 Kirrie Connections set up the first Scottish MC.
 Prior to the COVID-19 pandemic, there were 13 MCs in the UK. Despite the pandemic, there are now 32 funded MCs in England and Wales and 14 in Scotland with the likelihood of another 10 being funded before the end of 2023.
 Significant national and regional developments have taken place over the last three years. This has been driven by different policy decisions and funding opportunities across the three nations and has involved a variety of partnership working between academic, local authority, third sector, government and lived experience partners. The Scottish Government is supporting the development of a national MC network because of the recognition that capacity can be built, best practice shared, and communities empowered. In addition, the involvement of people affected by dementia is of paramount importance. In Scotland, this is being driven forward with a strategy board made up of a third people living with dementia, a third family carers and a third dementia professionals. This is being replicated in the new UK National MC Consortium.
 In the presentation, the different contexts and approaches to MCs will be described and compared. The audience will gain an understanding of the flexibility of the MC model in meeting the needs of people affected by dementia in different communities; the MC grassroots community development approach; and the impact of the involvement of people affected by dementia in the meaningful ongoing coproduction of MCs. 
 Brooker, D., Evans, S., Dröes, R. M., (2016), Framing outcomes of post-diagnostic psychosocial interventions in dementia: The Adaptation-Coping Model and Adjusting to Change. Working with Older People. Vol 21: Issue 1 
 Evans, S., Bray, J. and Brooker, D. (2021), ""How Meeting Centres continue to support people affected by dementia: report on UK COVID-19 impact"", Working with Older People, Vol. 25 No. 4, pp. 283-293. https://doi.org/10.1108/WWOP-12-2020-0060
 Evans, S., Bray, J., Brooker, D. and Stephens, N. (2022), ""The essential features of Meeting Centres: development of the UK criteria for community support for people affected by dementia"", Working with Older People, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/WWOP-03-2022-0009

How Canadian caregivers of persons living with dementia are managing in a fragmented system

People living with dementia (PLWD) often need many different health and social services throughout their journey, and navigating and accessing these services can be challenging due to a lack of integration in dementia care. PLWD often rely on caregivers, usually family members, to help them navigate the system and access the care and services they need. The importance of better co-ordination and integration of health, community, and residential dementia services has been highlighted in the World Health Organization’s (WHO) global action plan on the public health response to dementia and Canada’s National Dementia Strategy, however a widespread, robust plan for integrated care for PLWD has yet to be implemented. This leaves caregivers with the task of seeking out and accessing services on their own. The Alzheimer Societies across Canada aim to help caregivers navigate and access services by providing information, education, and support in system navigation to caregivers. In this study, we explored the experiences of caregivers accessing health and social services for their loved ones with dementia, and the role that the Alzheimer Society played in this journey. This work has been informed and guided by members the Alzheimer Society of Canada’s People with Lived Experience Advisory Group.
 We conducted semi-structured interviews with 34 caregiver clients of the Alzheimer Society across Canada in the Fall of 2022. Interviews were completed by phone or video conference and lasted between 20 and 73 minutes (mean=32 minutes). Participants were all caregivers of a PLWD and ranged in age from 42-89 (mean age= 63 years). There were 10 men, 23 women, and one non-binary person in our sample (caregiver spouse=18, caregiver child=15, caregiver sibling=1). Interviews were recorded and transcribed verbatim. Deductive coding, based on the interview questions, was used to identify themes.
 Experiences accessing health and social services varied widely among participants based on geographic location, disease progression or symptoms, existing social support and self-advocacy skills, and finances. Many caregivers had trouble accessing the services that they needed and found the system to be difficult to navigate. In many cases, the Alzheimer Society played an important role in making caregivers aware of the health and community services available and provided guidance on how to access those services in a timely way. Some participants, however, found that despite being provided with information and education, they continued to struggle due to a lack of access to quality care in the community (e.g. adult day programs, respite, and long-term care). Some participants experienced such extreme distress at being unable to access the care they needed for the PLWD, that they experienced physical and mental health issues themselves. 
 The Alzheimer Society and similar organizations help to make up for the lack of an integrated care system for PLWD, however, there remain large gaps in the ability of caregivers to access timely, adequate care. Fragmented, disjointed, and difficult to access care can have negative consequences for PLWD and their caregivers, and action is needed to further support the development of integrated dementia care services across Canada.