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P26. Connecting with minority groups

Detailed programme and abstracts

P26.1. Providing culture-sensitive care for elderly LGBT* with dementia

ROSUL-GAJIC Jagoda, PLATHNER Juliane, PEREK Franziska

MÜNCHENSTIFT GmbH, Munich, Germany

The MÜNCHENSTIFT GmbH (MST) is a non-profit cooperation of the city of München. It consists of 13 nursing homes and a home care nursing service. Since the year 2014, MST has been addressing and promoting the issues of elderly LGBT*.

This paper deals with the individual and culture-sensitive care for elderly LGBT* affected by dementia. PwD often have a changed or reduced inhibition threshold. A former hidden homosexuality could come to the fore in older age. In order to understand the needs of elderly LGBT*, our nursing staff is trained in raising awareness, adequate language and code of conduct. This is carried out in close cooperation with the LGBT* community (Raviola 2017, p. 48) as well as with our nursing home residents. The slogan of the disability movement applies to our work: “Listen to the voice of the LGBT*“.

The presenters will show aspects of inclusion, not segregation, illustrated by special training programs, visibility through the home page, the design of the nursing homes, social rooms and through cultural events.

Our final aim is the involvement and the empowerment of the elderly LGBT* living in our nursing homes. Our approach is innovative and contributes to a new awareness of the elderly LGBT* and new structures of elderly care in the German society.

P26.2. Intellectual disability and dementia – Effects of the implementation of non-pharmacological interventions

WATCHMAN Karen

University of Stirling, Stirling, United Kingdom

This 3-year participatory action study, 2017-2020, investigated if non-pharmacological interventions resulted in positive changes in behaviour associated with dementia in people with intellectual disability. Interventions included reminiscence in a range of different formats, life story, music playlists, cookery, aromatherapy, pet therapy, environmental or design change, exercise, cognitive games or sensory activities.

People with intellectual disability affected by dementia were involved at the inception of the study as advisors (n=1) and co-researchers (n=4). The study consisted of two cycles, each 6-months in duration. Cycle 1 included 7 participants with intellectual disability in the early stage of dementia and 12 support staff. Cycle 2 included 9 participants with a more profound disability or advanced dementia, and 10 support staff. In both cycles, a goal-setting tool firstly helped to identify individualised non-drug interventions. A pre- and post-behaviour change tool Neuropsychiatric Inventory Questionnaire (NPI-Q), was completed alongside semi-structured interviews, a bespoke tool to measure ‘in the moment’ changes, intervention diaries, and photovoice (accessible method to enable co-researchers with intellectual disability to share perspectives through photography). Cycle 2 saw the addition of the QUALID tool to measure quality of life in advanced dementia.

Of 239 separate interventions over a 6-month period in Cycle 1, 193 resulted in positive behaviour change with 75% of goals being achieved or exceeded. Cycle 2 findings are currently being analysed and will be presented at the conference.

The study recognised the importance of ‘in-the moment’ behaviour changes with consistent positive effect recorded on agitation, increase in verbal communication and positive changes in body language. Use of non-drug support has led to cultural change within participating organisations with less reliance on medication as a first response. Overall, findings suggest that non-drug interventions can provide an effective (and safe if used appropriately) alternative or complement to medication for people with intellectual disabilities. 

P26.3. People affected by dementia who have a faith, should be supported to practice it

FERNANDEZ GOMORA Daniela, BOULD Emma

Alzheimer’s Society, London, United Kingdom

75% of people across England and Wales identify as having a faith, and many are affected by dementia. For people with dementia and the associated problems of isolation and depression, support to live well is crucial to mental and emotional well-being. For many, support comes predominantly from their faith community. The benefits of continuing to practise faith include solace and routine. The right support is needed so people with dementia can remain actively engaged in activities they want to continue to do as part of everyday life.

Lack of understanding of dementia in certain communities is exacerbating the problem of isolation and this work aims to:

  • Find solutions to overcome challenges faced by people with dementia in places of worship and in the community
  • Inspire faith communities and places of worship to become dementia-friendly
  • Change perceptions about dementia, resulting in meaningful support for people with dementia and their carers
  • Encourage more people affected by dementia to remain engaged with their faith as part of our mission for people living with dementia to lead the lives they choose

To do this Alzheimer’s Society has:

  • Hosted a faith event in Spring 2018 to share best practise, gather learning and insight how to support faith groups
  • Produced faith leaflets with information for six key faith groups, to prompt understanding across different faith groups

This leaflet provides information on what is dementia, the importance of faith to a person with dementia, challenges people face when interacting with their faith and specific recommendations how to help someone affected to continue to practise. These were translated into 11 languages including:

  • Islam and dementia – Bengali, Arabic, Urdu, Somali
  • Sikhism and dementia – Punjabi
  • Hinduism and dementia – Guajarati, Hindi
  • Faith and dementia – Cantonese, Mandarin, Polish, Welsh
  • Christianity and dementia – Welsh
  • Judaism and dementia 

P26.4. Dementia Friendly Bronx: Extending a European care model to aging minority residents living with dementia of New York City

MCGOVERN Justine, BAMBURY Alvan, URENA Natalie

Lehman College, City University of New York, Bronx, New York, United States

This presentation traces the successes and challenges experienced by the authors in replicating a global dementia care model, the Dementia Friendly Community (DFC) model, in the Bronx, New York. With some of the highest rates of ethnic and cultural diversity and worst social and health outcomes in the United States, Bronx residents face specific challenges that become increasing difficult with advancing age and the progression of Alzheimer's disease and related dementias.

Specifically, few tailored services and supports are in place to meet the increasing needs of diverse residents living with dementia and aging in place, and service providers report feeling under-prepared. As a result, older adults living with dementia in the Bronx, experience high rates of institutionalization and social isolation, with concurrent conditions such as poor outcomes from illness and injury, poor quality of life, and pre-mature mortality.

Evaluations of the DFC model in the U.K. and the Netherlands indicate that it is successful in supporting individuals living with dementia and their carers who remain at home. In the U.S., DFCs have been implemented in Minnesota, Wisconsin, Colorado and other areas, but are largely absent from major urban centers with highly diverse, aging immigrant and minority populations. However, as a community-based person-centered care model, DFCs are well suited to increasing quality of life and social and health outcomes for hard-to-reach and under-served populations, such as those living in the Bronx.

Beyond tracking the progress of program implementation, the presentation will articulate implications for improving care for minority persons living with dementia, and will make suggestions for next steps. These include enhancing community-based multi-disciplinary collaborations, and increasing workforce preparedness with specialized training. The first of its kind in New York City, Dementia Friendly Bronx highlights the importance of international exchange in better meeting needs of persons living with dementia.

P26.5. Importance of religion in dementia experience of and dementia care for older migrants in Belgium

BERDAI CHAOUNI Saloua1, CLAEYS Ann2, DE DONDER Liesbeth3

1Erasmus Hogeschool Brussel, Brussels, Belgium, 2University of Applied Sciences Erasmus Brussels / Vrije Universiteit Brussel, Brussels, Belgium, 3Vrije Universiteit Brussel, Brussels, Belgium

The number of older people with a migration background in West-European cities like Brussels is growing fast. At this moment, one-third of the older adults above 65 years in Brussels has a migration background. In 2020, this will be one in two older adults.  Yet, little is known about dementia experience of and dementia care for this group. Although dementia experience is defined by universal aspects related to the impact of dementia as a physical and cognitive condition, studies showed that migration, culture and religion also affect this experience. This study aims to explore the role of religion in the lived experiences of informal caregivers caring for older people with migration background. In-depth interviews were held with 40 family caregivers of older migrants with dementia of Moroccan, Turkish and Italian origin having a Muslim and Christian background. The results show the importance of religion as (1) a co-definer of the experience of dementia, (2) a potential dementia care supporting tool, (3) an influencer of the daily dementia care practice and the experience of professional care use (4) and an important coping strategy in dealing with dementia for both people with dementia and the family caregiver. Religion seems an important factor in the lived experience of dementia for religious family caregivers with a possible positive effect on the provision of care.

The discussion emphasizes the need to broaden the biomedical framework and to recognize the importance of religion into the experience of dementia. Religion-sensitivity is needed when designing and implementing a more suitable care that meets the multi-layered identity of older people with a migration background avoiding a essentialistion of these older persons to a certain ‘culture’ or ‘cultural group’. Recognizing and naming religion and spirituality as part of the dementia experience offers opportunities for better and more holistic care.

P26.6. Dementia in Bedouin society in Southern Israel – Raising awareness and developing services

BAR EL FREMDER Hadas

EMDA, Ramat Gan, Israel

In Israel, different sectors and societies co-exist. In Southern Israel there are 250,000 Bedouins. Approximately 17% of their elderly population are people with dementia (PwD).

The Bedouins are Muslims. In the past they were tribes of nomads, and today most of them are permanent residents in nine municipalities. Their society is complex – on the one hand they are closed, traditional and patriarchal (where duty and family members taking care of the elderly is automatic, and it is not customary to send them to day care centers / old people's homes). On the other hand, dementia is often considered to be a normal part of getting old, and in most cases it is hidden and not spoken about. Bedouins are generally unaware that dementia is a disease, with both treatment options and support for family care-givers. This lack of awareness can cause situations of neglect, and even abuse, due to frustrated and exhausted care-givers.

Additionally, in Bedouin society, old people are considered to be wise and experienced, and are often regarded as policy-setting authorities. PwDs lose their elevated status in society, and this is devastating both for them and their family members.

In EMDA, the Alzheimer Association in Israel, we are working, through the last year, on a thorough process of raising awareness of dementia among Bedouin professionals, and through them reaching out to family care-givers. We've met with social workers, academics, Muslim leaders and health professionals, distributed materials in Arabic, and more.

The outcomes: A support group for female family care-givers was founded, a psychosocial intervention program for families started, and professional dementia forums and professional conferences organized. There is still a lack of knowledge and cultural boundaries, but both professionals and family members are interested and enthusiastic to continue this process together.

 

 
 

Last Updated: Tuesday 13 August 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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