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Supporting older people with learning disabilities and their families
Supporting older people with learning disabilities and their families

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2 Getting older with a learning disability

A photograph of a man being helped by his carer.

As the life expectancy of people with learning disabilities has increased, there has been growing interest in how to support people well in older age. In previous years most older people with learning disabilities would have been living with families or in residential care. But increasingly people live in more independent arrangements as they age, for example, in supported living, or in their own home with support (Tilley et al., 2023).

Wherever people are living as they get older, they have a right to person-centred support. Commissioners, service providers and practitioners should all be thinking about what this means. How can people be supported to feel well and safe as they age? How can people be supported to plan for the changes that come with growing older? How should support be adapted to respond to these changes?

It is also important to think about the specific challenges that might face older people with learning disabilities who have at times displayed behaviours of concern. Some people with learning disabilities may demonstrate behaviours that challenge others for the first time as they get older, perhaps due to the onset of a new health condition, such as dementia. In our research, we defined ‘older’ as 40+ for people with learning disabilities to reflect the early onset of some chronic health conditions for this population.

Activity 3 Ageing and behaviours that may challenge others

Timing: Allow about 10 minutes

Can you think of up to three specific challenges that people with learning disabilities and behaviour that challenges others might face as they get older?

Watch the panel talking about their answers to this question.

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The three challenges that our panel members drew attention to were:

  1. There is a need to ensure the person has a care plan in place that looks to the future and anticipates specific changes that may occur, for example, a family member becoming ill, or dying.
  2. Our panel highlighted the importance of identifying and responding to age related health changes (e.g. women with learning disabilities going through the menopause). Sometimes a person’s behaviours can be an indicator that the person is unwell or experiencing a health-related change (for example, in the case of the UTI that was discussed). The panel also emphasised the risks of diagnostic overshadowing, which is when a person’s behaviour is incorrectly attributed to their learning disability (or to their history of so-called ‘challenging behaviour’) and thus a critical opportunity to identify a potential symptom of ill-health is missed.
  3. Ben Briggs also drew attention to people and their families becoming fatigued by the system as they get older. After years of advocating for the right support, people may simply run out of physical and emotional energy to keep fighting. Practitioners must be alert to this and recognise when the person and their family carers may have unmet needs.

As the previous activity has shown, the way someone is behaving may indicate a health related change as they get older. The label of challenging behaviour can also lead inadvertently to diagnostic overshadowing, where a symptom is missed because of incorrect assumptions about the person’s behaviour.