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P20. Minority groups

Detailed programme and abstracts

P20. Minority groups (Wednesday 2 Nov., 10.30 - 12.00)

P20.1. The significance of ethnicity and culture in dementia care for British-Somalis in the UK: implications for policy and practice

AHMED Anya, EGAL Ubah

Migratory patterns since the 1950s mean that the UK is now home to a significant and diverse population which is now reaching old age. Dementia has been identified as the biggest health and social care challenge facing society, and the number of people with dementia from a range of ethnic backgrounds in the UK is increasing. However, little is known about the experiences of people from Black and Minority Ethnic (BME) communities with dementia and their carers, and there is a paucity of research. Within less-heard communities there are also yet more ‘hidden communities’ which also challenges the homogenising effects of being subsumed by categorisations such as ‘BME’. One such community in the UK is the British-Somali community, which, despite being one of the largest and most long-established in Europe, continues to experience poor health outcomes. Importantly, most attempts at classification fail to capture the position of British-Somalis in relation to ethnicity and culture.

In this paper we present new empirical evidence from a study conducted in the London Borough of Camden which focuses on the experiences of people from the British-Somali community living with dementia and their carers. We posit that a lack of understanding of people’s origins, culture and background can potentially lead to negative experiences of dementia care and compound poor health outcomes and inequality. There are a number of implications arising from this research in terms of the social framing of care: for policy, commissioning, and practice and also from the perspective of service users and carers. Such issues also have sociological importance, and we unravel how positionality – or social ontologies with reference to nationality/ethnicity and religion/culture – can inter-relate or ‘translocate’ in terms of producing social relations and shaping experiences of dementia and care. 

P20.2. Jenny’s Diary: An evidence-informed approach to support conversations about dementia with people who have an intellectual disability.

WATCHMAN Karen

Scotland’s second National Dementia Strategy 2013-16 identified people with an intellectual disability as having particular challenges in the context of dementia; this is a population already marginalised before a diagnosis of dementia due to the perception of others about their disability. Although enjoying increased life expectancy, with enhanced medical and social interventions and improved quality of life, it is known that some people with an intellectual disability will develop dementia at a younger age. This particularly applies to individuals with Down syndrome, with as many as 1 in 3 people aged over 50 being diagnosed. 

This session will present a new evidence-informed resource to support conversations with people who have an intellectual disability: Jenny’s Diary. This free resource, in both electronic and printed formats, exemplifies how universities can make research findings accessible for people with an intellectual disability, their friends and families, and professionals who provide support. Jenny’s Diary is a three-part pictorial booklet that, in Part 1, shares activities and challenges in a typical week for Jenny, who has Down syndrome and dementia. Suggested strategies emphasise the importance of implementing individualised supports and social interventions that are appropriate to Jenny’s changing needs and preferences.  Parts 2 provides a framework for talking to Jenny about her diagnosis of dementia, whilst Part 3 offers suggestions for talking to Jenny’s friends or partner in a way that is both meaningful and supportive of their relationship.

The evidence underpinning this resource will be presented. This includes: lack of disclosure of the diagnosis to people with an intellectual disability, poor recognition of individual sense of identity, and limited awareness of the first-hand experiences of people with an intellectual disability and dementia. The importance of a pro-active approach is recognised to address the increased marginalisation of people with an intellectual disability after a diagnosis of dementia.

P20.3. Beyond family: Lessons learned from LGBT care partnering

MCGOVERN Justine

This presentation argues for expanding Alzheimer’s and dementia care beyond models that focus on traditional family structures to better meet needs in the context of increasing diversity among older adults worldwide. Growing numbers of adults are aging without a partner or adult children to care for them, forcing a shift from care models that focus on families. Building on experiences of care partnering among older lesbian, gay, bisexual and transgender (LGBT) adults, the presentation introduces innovative and effective care approaches that increase social support, reduce perception of burden, and enhance quality of life for persons with the disease and their care partners, regardless of sexual identification.

The number of LGBT dementia-affected persons is currently upward of 350,000 in the United States alone, reaches well above 1 million worldwide, and is expected to triple by 2050. Members of LGBT communities affected by Alzheimer’s and other dementia face specific challenges. The intersection of sexual identity, cohort, and bias can affect quality of life, resulting in disparities experienced by members of these communities as compared to non-LGBT dementia-affected persons.  LGBT communities are not, however, without resources. Care partnering among LGBT older adults is often a communal enterprise.  Among LGBT care partnerships, extended social networks and community resources often replace immediate family.

There are lessons to be learned for dementia care professionals providing services to increasingly diverse older adults, many without a partner or adult child to care for them.  These include improving workforce preparedness through cultural humility training, providing services tailored to diverse communities, such as identity-specific support groups, and increasing inclusivity in Alzheimer’s research to develop new knowledge about resources and resiliencies among under-represented communities.

P20.4. Innovative approaches in dementia care-breaking language and cultural barriers and reaching out to South Asian Tamil Seniors using a person centred approach

VAVILLA Jayasudha

Background: Canada has a Tamil population of 143,395[1].A significant aging Tamil population live in Toronto for whom language is a barrier for accessing supports and services in the community. Cultural interpretations of dementia symptoms, particularly forgetfulness is commonly perceived as normal aging, further propagates myths and limits access to resources.

Aim: To reach Tamil speaking South Asian seniors community using a person centred and inclusive approach that builds awareness by providing education, support and counselling.

Method: The Social Worker used her language skills and professional experience to reach out to Tamil seniors through Tamil workshops by sharing dementia care knowledge and dispelling the myths surrounding the disease. Interactive activities with culturally relevant slides and handouts in Tamil were developed to make it inclusive and person centred. 

Outcomes: Evaluation surveys results from 281 participants indicated a high level of satisfaction with workshop content. Feedback indicated that the workshop helped in building awareness about adopting lifestyle changes and preventive strategies related to brain health. The Social Worker translated English brochures related to Dementia to reinforce the learning. Participants contacted the Social Worker for ongoing counselling and support to better manage the challenges of caregiving. There has been an increase in referrals received from agencies requesting services for Tamil speaking clients. These efforts have led to the development of a unique Tamil caregiver support group

Conclusions: Cultural factors, myths, stigma and minimal availability of programs or services in Tamil geared towards helping Tamil Seniors acts as a barrier to caregivers’ understanding of dementia, how to cope with the disease and where to access supportive services. This program filled a gap in services by equipping participants with skills, knowledge, education and access to a variety of community supports which was previously inaccessible due to a language or cultural barrier.

[1] Statistics Canada (2011). Census of Population, Statistics Canada Catalogue.  Ottawa, Ont.: Statistics Canada. no. 98-314-XCB2011017.

P20.5. Support groups for children and youngsters living with a parent with dementia

LIND Ida, HANSEN Else, ECKERMANN Ane

Children and youngsters living with a parent with dementia is an often overlooked minority group of carers. However, their lives are affected severely by their parent’s disease both psychologically and socially. In Denmark there has been no systematic attempt to support the children, until 2015 when the Danish Alzheimer Association started a pilot project on the subject. The project’s main purpose is to generate knowledge with the establishment of support groups for the young carers.

First a literature study was conducted reviewing the theme ‘children and dementia’ internationally. The aim was to find methods developed to support the children living with a parent with dementia, but the results showed that very little knowledge exists on the subject. The design of the support group intervention has therefore been shaped by the experiences from support groups for children to parents with psychological illnesses and cancer.

In the fall of 2015 three support groups started. The groups are moderated by two group facilitators with experience with dementia and children living with a severely ill parent. Throughout a period of 1,5 years the adolescents participate in 11 meetings plus one weekend camp. The adolescents are between 15-29 years old, with an average of 21,5 years.

The project will be evaluated by an external evaluator using surveys and focus group interviews with the adolescents and the group facilitators. The same survey is filled out by the adolescents before, during and after participating in the group, making it possible to follow the development in children’s well-being and coping abilities. The results of the project are ready in September 2017. Results from the midterm evaluation will be presented at the conference.

The results will provide basis for the development of recommendations to professionals on how to trace and support children living with a parent with dementia.

P20.6. Care needs and experiences with the use of services of people with young-onset dementia and their caregivers

MILLENAAR Joany, BAKKER Christian, van VLIET Deliane, KOOPMANS Raymond, KURZ Alexander, VERHEY Frans, de VUGT Marjolein

Objective: Dementia is often associated with advancing age. However, in approximately 6-9% of all cases the onset of dementia is before the age of 65, resulting in additional problems specifically related to a younger age. Dementia services are often specifically designed for the elderly and might have difficulties in addressing the needs of younger individuals. This study is part of the Research to Assess Policies and Strategies for Dementia in the Young (RHAPSODY) project. Insight in the specific needs in young onset dementia (YOD) is an important first step in this project and will provide the basis for the development of an e-health intervention to assist caregivers in coping with YOD in several European countries. The aim of this study is to investigate the specific issues people with young onset dementia and their caregivers face and how this relates to unmet needs.

Methods: A qualitative content analysis method was used to analyse 18 semi-structured interviews with caregivers caring for someone with YOD. Caregivers were selected based on a ranking of unmet needs, assessed with the Camberwell Assessment of Needs in the Elderly to capture differences and similarities between caregivers that experienced high levels of unmet needs versus those with low levels of unmet needs.

Results: Findings revealed the following themes: availability and fit of health care services; acceptance of diagnosis; quality of the relationship; role adaptation; support system and communication; attitude of the person with dementia. Several factors were more apparent in the caregivers who experienced few unmet needs opposed to the caregivers who experienced more unmet needs.

Conclusion: Knowledge about these themes is an important prerequisite for the development of appropriate care and support. A positive combination of different factors more often lead to a caring situation in which the caregiver experiences less unmet needs.

 

 
 

Last Updated: Tuesday 10 January 2017

 

 
  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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