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Let’s talk dementia - Early onset dementia in people with a learning disability - Pauline Watts

Pauline Watts 2016Although it is well documented that earlier onset dementia for people who have a learning disability is a higher percentage than national average, for everyone, a combination of genetics and lifestyle factors, together with chance occurrences have an impact on how long we live.

As such we must remember that, as nurses, we have a responsibility to ensure that we reduce the impact of health and wellbeing inequalities when we are working with people who have a learning disability. Healthy lifestyles remain one of the major factors in reducing vascular dementia. Healthy heart, healthy brain!

Onto a more specific group of people- in people with Down’s syndrome the incidence of Alzheimer’s disease with increasing age happens earlier in life than the general population due to a reduced life expectancy and possible premature ageing. This is on average  a third less than the average life expectancy for people without Down’s syndrome.

Alzheimer’s is a specific form of dementia and caused by ‘plaques and tangles’ on the brain.

Knowing these facts  is only  helpful when combined with action, as nurses we need to know what to look out for and how to help, also how to enable those working with people with a learning disability to recognise changes and to seek support and access early intervention.

Pauline – alternates between we a collective ownership of issues and you – which sounds a bit telling what to do Firstly I feel a need to reiterate the obvious, to observe change you need to know what is usual for the individual, only then can you recognise subtle changes such as:

  • Changes in personality, changing moods, irritability, stubbornness
  • Changes in living skills, loss of ability to undertake previously acquired tasks of day to day functioning
  • Disorientation and difficulty finding way around familiar environments, ability to plan and undertake complex tasks (dyspraxia)
  • Memory loss increasing, losing names of familiar people and for recent events
  • Language problems, increasing inability to understand or use language appropriately (dysphasia)
  • Problems with sleep
  • Agitation or apathy

Don’t automatically assume that you are seeing onset of dementia, remember that infection can also cause all of the above to be present.

If you or others are concerned it is time to act. Go to the GP first and to rule out other possible causes and get routine checks done. People with a learning disability are less likely to access routine health checks and screening and you need to be the advocate!

Support families to access or refer directly to local community LD team/specialist services for support and advice.

If a diagnosis of Alzheimer’s disease/Dementia is made, consider the possible use of anti-dementia medication to minimise the impact of the loss of skills and to maximise quality of life. Again this may not be automatically considered, remember reducing health inequalities, reducing the health care/quality gap.

We need to develop nursing practice ensuring professionals have access to the right information, skills and knowledge. Take the opportunity to learn more. Dementia is one of the Governments priority areas and there are lots of resources and e-learning packages out there. Here are links to a few:

Here are some simple tips/reminders:

  • Access e-learning materials on dementia Access specific resources relating to dementia and people with Down’s Syndrome Be sure that you look at the whole person not the diagnosis
  • Be calm and relaxed around the person and give more time
  • Try to use regular carers, familiar faces
  • Promote a healthy lifestyle ‘healthy heart healthy brain’ reduce the likelihood of vascular dementia
  • Access appropriate assessment and investigations (often not carried out because the person has a learning disability – rare possibility brain tumour.

Please broaden your knowledge and add value to the whole life course. Ageing well and supporting people with dementia, including end of life care with dignity, is so important. To provide the best person-centred care for end of life care of people with learning disabilities and dementia  requires particular skills and care.  Act with integrity and courage and be the person that made that difference!

Public Health England has developed an online resource called All Our Health. It is for all healthcare professionals and is aimed at helping them use their knowledge, skills and relationships, working with patients and the population, to prevent illness, protect health and promote wellbeing. A number of chapters have already been published and I am delighted to announce that later this summer a chapter on learning disabilities will be published. Current chapters can be found at:

Pauline Watts
Lead Nurse for Learning Disabilities and Dementia, Public Health England

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