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Towards dementia friendly communities in the UNECE region

Photo: Alzheimer Genève

Every 3 seconds someone develops dementia. The number of people with dementia worldwide is around 50 million, and due to population ageing it is expected to triple by 2050. Although dementia – which is not part of the normal ageing process – affects mainly older people, it also has a significant impact on the lives of those who care for them, as part of the broader communities in which they live.

Most people will be carers at some point in their lives – for their spouse, children, parents, friends or other relatives. Women provide the majority of dementia care. According to Eurocarers, the number of dementia carers in the European Union alone is estimated at more than 10 million, and this number is projected to rise to over 18 million by 2050.

Caring can be beneficial and rewarding, but it can also cause deterioration in mental and physical health, financial hardship, and social isolation. It can be difficult to combine paid work with caring duties. Dementia carers, whose care responsibilities can be very intensive and often unpredictable may choose to take on less demanding jobs, reduce their working hours or even quit work, which all increase the risk of poverty and social exclusion. Earlier this year, UNECE Policy Brief on Ageing No. 22 on the Challenging roles of informal carers provided key recommendations for policy measures needed to support informal carers.

In the Lisbon Ministerial Declaration, adopted in 2017, UNECE member States set the goal of ensuring ageing with dignity which includes enabling the participation of persons with dementia and of their informal carers in social and community life through support provided by community-based services (paragraph 31).

Persons with dementia and their carers often face stigma and lack of understanding of dementia in the community which can lead to isolation and social exclusion. Recently, when policy makers, researchers and civil society organizations met in Geneva for UNECE’s second policy seminar on ageing and discussed how informal carers of people with dementia can be supported, several examples of measures taken towards creating more dementia friendly communities where highlighted.

Dementia friendly communities, as defined by Alzheimer Disease International, are places or cultures in which people with dementia and their carers are understood, respected and supported. People with dementia often withdraw from their community due to stigma and lack of awareness. In a dementia friendly community, people are aware of and understand dementia, they know how to interact with people with dementia and how to help them. If appropriately supported, people with dementia can continue to contribute to society.

One example of a coordinated effort to make communities more dementia-aware and supportive is the  programme „Alliance for People with Dementia“ in Germany. The programme, which involves a broad range of societal actors at national and local level, through local alliances for people with dementia, aims to create dementia friendly communities through awareness-raising and supporting people with dementia and their carers. The programme has laid the foundation for a national dementia strategy that is currently under development.

One of the challenges for carers of people with dementia is wandering. As a person with dementia may not remember his or her name or address and become disoriented even in familiar places, they might get lost in the community and go missing.  According to the Alzheimer’s Association, six in ten people with dementia will wander and this is just one example of how a sensitized community can help identify a wandering person and help them return home safely.

As it is often members of the local police who are contacted when a person with dementia goes missing, the sensitization of police officers to dementia is key to ensuring that persons affected will be treated in the right way. These officers may also come in contact with people with dementia in other difficult situations. Therefore, it is important that training is not limited just to issues around wandering, but to encompasses other situations such as shoplifting, acting aggressively or inappropriately, having delusions that someone is trying to harm them, driving erratically, being abused, neglected or financially exploited.

In Geneva, the local Alzheimer Association Alzheimer Genève teamed up with the police force to develop a training programme for the cantonal police, city janitors and collaborators of the Department of Social Work that sensitizes professionals on how to help people with dementia and treat them with respect. A successful and inspiring pilot programme developed in Geneva, it is planned to expand the programme to other regions in Switzerland and to other public service providers.

Read more:

Policy Brief on Ageing No. 22 on the challenging roles of people with dementia

Policy Seminar on Informal Care for persons with dementia

Alzheimer’s Disease International  Dementia Friendly Communities