Learning disability and dementia: ensuring wellbeing and inclusive communities

19 September 2017

People with learning disabilities are living longer lives than ever and are developing the same health conditions as everyone related to older age. They do, however, also have an increased risk of developing dementia at an earlier age, and people with Down’s syndrome an even greater risk of developing the condition earlier, with 1 in 50 aged 30-39 and 1 in 10 aged 40-49.

There is an urgency, as our population ages, to ensure our communities and services are equipped to be flexible and responsive to the changing needs of this population whilst ensuring that they receive the support they need to remain connected in their communities and live well into old age. 

While health and social care services are evolving at a rapid pace to keep up with this change, policies do not always appear to take into account the particular needs of those who are ageing with a learning disability.

Community care

David Cameron's challenge on dementia 2020 stressed the importance of supporting those with dementia to stay in their homes, in familiar surroundings around those they know, and to create Dementia Friendly Communities. This community living priority applies to everyone with dementia, including those with learning disabilities. 

Communities based around strong relational experiences offer an opportunity to both support those with learning disabilities and dementia, as well as strengthening community awareness to be able to identify signs early. This means not only educating people and organisations about learning disabilities and dementia, but also making them think about people who appear 'different' in a more welcoming, understanding and friendly way. 

Communities must be encouraged to create an inclusive environment and a relationship-based support system for them. A 'friendly community' must inevitably focus on improving everyday contact points used by them, whether they are organisations or friendship and family groups.

A rights-based approach

A rights-based approach is central to providing an environment that makes life easier and fairer for people with learning disabilities and dementia. This approach raises questions around how learning disabilities and dementia are viewed and discussed in the public sphere, and focuses on how to increase legal protections, as well as entitlement to services. 

It should be noted that this approach has been applied to learning disability rights more so than for those with dementia. At present, dementia is not readily recognised as a disability in policy terms and in not as readily considered in human rights debates as other marginalised groups, which has a direct impact on securing rights in law.  

Social and emotional isolation are key factors affecting our mental health. We know that depression amongst older people is increasing and has been linked to dementia. It is estimated that up to 40% of people with dementia may also have depression, which can compound isolation and speed up cognitive decline. 

Living environments

Our immediate living environment has a significant impact on mental health outcomes, so we need to make sure resources are allocated appropriately through understanding the heightened risks of isolation faced by those with learning disabilities. 

Going into care or experiencing a change in environment are life events associated with social isolation amongst older people. This doesn't always need to be the case. Emphasis needs to be shifted towards investment into community projects that focus on improving mental health in later life that is inclusive of those with learning disabilities, through supporting emotional and social connections with family, the community and the people who are providing care and support services.

What can be done?

More needs to be done to improve the quality of life for those with learning disabilities and dementia. This week the Dementia Action Alliance publishes its recommendations on Seldom Heard Groups which includes learning disability. 

We support the recommendations as there is much to do to improve practice and outcomes for people with learning disability and dementia. From the improvement of early diagnosis and person-centred care to raising awareness on support and person-centred commissioning. 

The main recommendation is that people are supported in the environment in which they live with the people they know best. The community setting presents an environment that enables each individual to decide how and where they would like to live, promotes inclusion, and ensures that their agency is both valued and recognised.