What do Dementia Friendly Communities (DFCs) offer people diagnosed with young onset dementia (YOD)? A blog by Dr Andrea Mayrhofer
When people are diagnosed with dementia under the age of 65 the condition is referred to as Young Onset Dementia (YOD). In the UK, approximately 5% of people living with dementia (n=42,500) have been diagnosed with YOD. Their support needs differ considerably from those of older people living with dementia. They might still be employed, carry financial responsibilities for children and/or parents and be more active than older people living with dementia. Unplanned premature retirement means that pension pay-out may be delayed, and family caregivers either give up work to provide care to the person living with YOD or need to find employment to supplement lost income.
People diagnosed with YOD constitute a minority within dementia care. Some individuals are well known through their advocacy work via national charities or blogging on international platforms https://whichmeamitoday.wordpress.com/. Many families struggle to find age-specific support in their local communities. Dementia Friendly Communities (DFCs) identified in phase one of the DEMCOM project offered a range of generic and person-centred support, but there was little mention of provision for families affected by YOD. We know from the literature that location-based DFCs can encourage people to participate in employment at local shops, gardening programmes, or in a peer-counselling role. Organisation-based DFCs such as banks and Citizens Advice Bureaus could be ideally placed to assist in addressing concerns relating to social welfare, benefits and pension pay-outs.
The DEMCOM project has had great Patient and Public Involvement (PPI) from people living with YOD, and we trust that DFCs will come to recognise the contribution that younger people living with dementia can make to designing services and care-pathways in local communities. It is often people living with YOD who are some of the best advocates for the right to live well with dementia and reducing the stigma and fear associated with a dementia diagnosis. There is great potential to build on what is already happening in Dementia Friendly Communities across the country. We need to harness the heightened awareness of social citizenship, enabling vs disabling local environments, and the involvement of local decision makers in ways that can include people living with YOD.
The challenge is to know how to best link, co-ordinate and integrate current efforts to improve the provision and sustainability of services for people affected by YOD as an important part of DFC’s activities. There are examples of how approaches to co-creating and co-producing services can offer meaningful support to those affected by Young Onset Dementia http://www.tandfonline.com/doi/abs/10.1080/13607863.2017.1334038 and Dementia Friendly Communities are in a unique position to incorporate support for younger people living with dementia and their families at all levels of DFC development.
The Dementia Friendly Communities: The DEMCOM evaluation project was funded by the NIHR Policy Research Programme, PR-R15-0116-21003
Department of Health Disclaimer:
The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR, NIHR, NHS or the Department of Health
For more information on the DEMCOM project page, please click here