As people with learning disabilities live longer we are seeing a corresponding increase in dementia occurrence. There are probably now more than 7,500 people in the UK with Down’s syndrome and dementia and more than 1,000 new cases every year. Dementia in people with Down’s generally presents early, sometimes as early as 35 years, peaking in the first part of the sixth decade of life. People with Down’s syndrome over the age of 65 have a two in three chance of developing dementia, while the same is true of 18-25% of all people with a learning disability aged over 65.
Dementia diagnosis requires the presence of cognitive decline over six months, often with associated health-related or emotional decline, loss of language and self-care skills and uncharacteristic behaviour. Personality changes may precede memory loss when dementia develops in Down’s syndrome. Several assessment tools have been developed specifically for dementia in a person with learning disabilities. Assessment should always include a direct evaluation of the person and the application of a questionnaire to a close carer, relative or friend.
Models of care and support
There are three basic models of care and support available for this group. One focuses on enabling the person to ‘stay in place’, whether in their own home or a supported environment. Though often considered a good option, making the necessary environmental modifications may not be possible, staff may not be trained in dementia care and there may be a negative impact on other users.
The second model, a move to a generic elderly dementia service, always provides the worst outcome for the individual but is not uncommon in today’s cost-cutting environment.
The third model involves moving to a specialist residential service designed to support people with this dual disability. These services aim to provide a home for life in a domestic-sized environment and provide a service geared towards both disabilities.
However, there is a marked scarcity of such specialist services, which is why Mentaur Ltd has opened Aurora House, a small specialist facility in Bedford designed to provide seven adults with learning disability and dementia with a home which complies with their specific needs and understands their singularity.
Ideally this should resemble normal housing and be calm and predictable. The design of Aurora House is dementia specific. Along with a sense of space, there is particular attention to sensory impact and environmental labelling through the use of specific colours and contrasts. Glare is avoided, as are sudden changes in light levels between and within rooms. Non-reflective surfaces and noise reduction technologies are used.
But in contrast to most dementia homes, the furniture has a distinctly modern feel and reflects the fact that people with a learning disability and dementia will tend to be younger and familiar with such objects.
Care and support
The house provides specialist staff training to continuously assess and support users with this dual diagnosis, including during periods of terminal care.
The focus in supporting this group shifts in on preservation of existing skills, rather than enablement. This means staff used to supporting people towards greater independence need training and experience in supporting people with this dual diagnosis. Some of the crucial areas which require specialised staff training are in communication tools, awareness of changing health needs and understanding and managing behaviour.
In 1900, in the United Kingdom, a person with Down’s lived on average for nine years. In 2010, the figure was 56 years. While this great leap forward in life expectancy is a cause for much celebration, we must ensure that we have the right services in place to deal with its consequences and ensure a better life for people with learning disabilities as they age.
Shekhar Mukherji is a psychiatrist and a director of Mentaur Ltd. Email him for more information.
A look at one of the UK’s first care homes for people with dementia and Down’s syndrome