In a ground-breaking report published today, the Mental Health Foundation calls for public debate on a new way of thinking about dementia
“We need to move towards a more-person-centred, autonomous and community-based system which recognises that dementia is a disability and therefore is an issue of rights, social justice and equality”
Dementia, Rights and the Social Model of Disability, a new report published by the Mental Health Foundation, is calling for a radical shift in current thinking around dementia – specifically that dementia should be viewed as a disability. At present dementia is often seen through the lens of a conventional medical model – as an illness that needs a cure or treatment. In light of recent figures from Alzheimer’s Research UK which show that one-third of British people born in 2015 will develop dementia, it is important that we support efforts to treat or reduce the impact of the disease. However, it is also crucial that people with dementia have their rights respected and upheld. This requires more attention being paid to the impairments caused by dementia and how they impact on the person’s everyday life, including the way society treats them.
The report argues that viewing dementia as a disability rather than an illness would unlock the potential for policy to be developed and services designed, delivered, and monitored by people living with dementia. Who as a result will have a strengthened ability to advocate for appropriate levels of investment in social care so they can live as active citizens in the community.
Practical changes we might see as a result include:
•Better service improvements, and staff knowledge and skills, as people with dementia are routinely, not just occasionally, consulted about improving dementia care, or involved in staff training;
• Negative words about dementia such as “sufferers” or “demented” that are already considered by people with dementia as unhelpful also being understood as potentially discriminatory;
• The growth of dementia accessible and inclusive communities, supporting people with dementia to be active participants, not just recipients of services; and
• Developing new services to reduce the use of institutional care for people with dementia.
Toby Williamson, Head of Development and Later Life for the Mental Health Foundation, said:
“Viewing dementia from the social model perspective – as a disability – provides an alternative framework to rethink and reimagine dementia as a rights, social justice and equality issue. The use of ‘disability’ is a means to an end, not a negative, pejorative or stigmatising label to be imposed on individuals. ‘Disability’ in this context is not intended to focus on what a person can’t do, but rather the wider societal context in which a person with a disability lives their life and what they can do. The social model of disability will provide greater autonomy, dignity and influence to people with dementia.”
The contributors of the report argue that a social model puts people with dementia at centre stage, with their voices elevated, and where they are recognised as equal citizens with rights – as agents of change. A current manifestation of the social model in practice is the development of dementia-friendly communities.
This shift must take into account certain considerations, including: the views of those with dementia, the co-ordination of stakeholders, and collective promotion of a rights-based approach/social model of disability.