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PL3. Making our societies more dementia-inclusive

Detailed programme and abstracts

PL3.1. My expectations from dementia-inclusive communities

HEISE Bernd

Member of EWGPWD, Germany

Alzheimer's disease is sometimes still characterized by prejudice. It is hardly considered by a part of the population as a social problem. And it was for a long-time rarely discussed in public and in the media. And therefore not perceived as a task to act by many people. It is primarily regarded as an old-age disease. But the Alzheimer's disease has many facets and can also affect people in the middle of their working life. This may lead to a collapse of their life planning: the workplace may be lost, friends and acquaintances may turn away. She/he may be denied important competences.

And PWD (people with dementia) require all comprehensive information about the disease, its course and medical care.

Very important are the initiatives for PWD

  • To form dementia-friendly communities
  • Create opportunities for exchange between those affected
  • Removing barriers to MdM in public life

There are also positive developments that give us hope.

  • Treatment of the topic already in the schools and the
  • Dementia-friendly treatment of the topic in the media
  • In schools in Germany, the topic of dementia in the classroom has been started.
  • Despite significant setbacks, research on Alzheimer's disease continues.

But that is still too little: The Alzheimer's disease and their role in the public e.g. in TV hardly matters. But the disease is diverse and can also affect people in working life. When PWD are involved in communities, it is usually the social organizations and Alzheimer's societies that lead the way.

However, the goal remains that the inclusion and the removal of barriers for MmD is as must in our society as a whole.

PL3.2. Embedding intercultural care to support dementia care amongst minority ethnic communities

RAUF Mohammed Akhlaf

Meri Yaadain CiC, Bradford, United Kingdom

The generalised view of South Asian families is that they prefer to look after their own.  The extent to which this fact many be true or not depends on the barriers and facilitators for these families in their ability to gain adequate support for dementia.  Never-the-less, what is certain is the fact that these communities are part of the ageing population who migrated to Britain in the 1950s, 60s and 70s – now aged in their 60s, 70’s and 80’s. The expected seven to eight-fold increase in dementia amongst the minority ethnic communities, will have a significant impact on health and social care service provision.  Existing research identifies the inability of services to meet the current needs and expectations from the people in these communities who are living with dementia and from their family carers.  It also appears to be true that services are not embedding policy into practice enabling an equitable access to support services for a number of reasons. My research, as well as the work of Alzheimer Europe – ‘The development of intercultural care and support for people with dementia from minority groups’, highlight evidence to suggest there is a vital need for a greater understanding of the transitions associated with dementia and dementia care; especially given that these communities (families) are also undergoing changes.  The findings of the report and the research study present a contemporary review of the perceptions relating to influences of stigma, faith and gendered roles in the community as well as the barriers restricting uptake of culturally appropriate dementia care and support.

PL3.3. The Dutch National Programme for a dementia-inclusive society – a collaboration involving national and local authorities, associations and companies

MEERVELD Julie

Alzheimer Nederland, Netherlands

An inclusive society for people with dementia requires a concerted effort: experiences from the Netherlands.

This is what we know: Dementia is affecting more and more people. Currently 270,000 men and women in the Netherlands have a form of dementia. By 2040 this number will be half a million. Everyone will have to deal with the disease: as a patient, as a caregiver or as a family member or friend.

Also the number of professionals and informal carers per person with dementia is decreasing and a third of the people with dementia live alone. They want to live at home for as long as possible and increasingly continue to participate as much as possible. This has an impact not only on families, but also on the streetscape, the shopkeeper, the neighbourhood, police, home care and the hospital etc.

This is what we want: A society that accepts and knows how to communicate with people with dementia in every day life.

This is what we do:

  • Through TV commercials and social media campaigns we ask the public to support the movement and do the free online training.
  • We ask companies and municipalities to train their employees to become more dementia friendly.

This is how we monitor what we achieve:

  • We count the size of the dementia friendly movement: supporters, training courses, companies, municipalities, activities.
  • We monitor changes in the society.
  • We monitor experiences of informal carers nationwide (Dementia Monitor for Informal Care 2018).
  • We collect testimonials (on website).
  • We monitor government policies to ensure that they combine professional care with a more social approach.
  • We evaluate our own activities.

Our impact? I will tell you! You can have a look at some results at: www.samendementievriendelijk.nl.

PL3.4. Comparing dementia care and dementia-friendly initiatives across OECD countries

SUZUKI Elina

 

 
 

Last Updated: Friday 16 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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