Growing Older and Living with a Learning Disability

People with learning disabilities are more likely to develop dementia as they grow older according to the Social Care Institute for Excellence (SCIE). They may develop dementia at a younger age than non-learning disabled people and they may also experience deterioration from dementia at a faster rate than the general population.

Back in November 2021, I ran a twitter chat for @WeLDNurses about dementia and learning disabilities. You can read about it on the We Communities page. One of the key issues we discussed during the chat was surrounding diagnosis, which is often delayed in people with learning disabilities, with any change in their presentation being attributed to ‘challenging behaviour’ and not identified as being a symptom of dementia, but rather as a symptom of learning disability. The Alzheimer’s Society have assessed that 1 in 5 people with learning disability who are over the age of 65 will develop dementia, so a change in presentation for older people with learning disabilities needs careful consideration as to why it's happening and what it might mean.

This brings us to the challenge of assessing people with learning disabilities for dementia, after eliminating other reversible or treatable causes for any change in a person’s functional skills. The Alzheimer's Society fact sheet has some useful guidance about the process of assessment and what we should be looking for and Dementia UK have a really useful information page. But the assessment tools seem harder to find. The Dementia Questionnaire for People with Learning Disabilities (DLD) and the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) are commonly used assessments, but is there enough research about how effective they are in supporting earlier diagnosis and treatment?

It is advocated that a multi-disciplinary approach to diagnosis is best, with input and assessment from psychiatrists, clinical psychologists, and occupational therapists as well as learning disability nurses. The assessment needs to consider the person and their carers when taking a detailed history, and completing a health assessment to establish a baseline function and the necessary cognitive assessments such as the DSQIID (see above). The multi-disciplinary team then review all the results together to determine a diagnosis. It is estimated that the assessments and subsequent clinical review can take up to 8 hours to complete for each person. NICE have some useful information about the practicalities and processes for dementia assessments.

There is evidence to suggest that completing a baseline assessment of function would be the gold standard. For people with learning disabilities, this baseline assessment should be completed when people who have Down Syndrome are about 30 years of age and for people with other learning disabilities screening should take place at about 50 years of age. There are areas like Hertfordshire who have developed proactive screening pathways specifically to address this and are offering baseline screening to all people with learning disabilities from the age of 30, but it would be good if this was standardised practice across the four countries.

Another of the key issues I’ve found is treatment. Once the assessment is complete and diagnosis determined, how do we plan and deliver treatment for people with learning disabilities and dementia? Healthcare staff and family members supporting people with learning disabilities need to be aware of other health care needs associated with ageing which may affect the people they care for. Public Health England suggest that 30% of the current incidence of dementia in the general population would be prevented by addressing risk factors such as high blood pressure, diabetes, obesity, depression, smoking and inactivity – and we know that people with learning disabilities are at increased risk of all of these factors except smoking. This would suggest a lifespan approach to healthy living and embedding good health literacy and lifestyle habits from a young age, may be a role for school nurses as well as learning disability nurses.

Treatment can also involve the use of prescribed medication, which while it won’t cure dementia, can ease symptoms and prevent deterioration. There is evidence to suggest the use of medication may improve quality of life, although there are, as with all medications, side effects and contraindications to be aware of.

Finally we have to consider how we support people with learning disability and dementia to live with their condition. Making their home dementia friendly, removing unnecessary trip hazards and labelling rooms, cupboards and other items the person may need to locate and use regularly. Taking time to communicate. This is something that should be common practice in learning disability services, but healthcare staff need to be aware that as the person’s dementia progresses they may need additional time and objects of reference to support their understanding and maintain their independence as long as possible. It is also important to maximise overall health and ensure that any early warning signs of physical deterioration are acted on, supporting the person to attend appointments and any reversible conditions such as infections are treated.

As difficult as it may be to discuss advance care decisions, this should be addressed with the person if possible, or via utilising the Best Interests process and pathway to plan and prepare for whatever comes next.