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Caring for an older family member with learning disabilities
Caring for an older family member with learning disabilities

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1 The best care possible

We know that you only want the best care for your family member. Spend a few minutes thinking about this using the next activity.

Activity 1 What are the components of excellent care?

Timing: Allow 10 minutes

Our research project showed that there were three key elements to providing excellent care to older people with learning disabilities and behaviours that challenge others. Watch this short animation about the Quilt of Excellence. As you watch, think about the following questions:

  1. What do you and the family member for whom you care see as being the best care?
  2. What changes will you need to make in your life that will help you cope?
  3. What changes will you need to make to the life of your family member to help you all cope with planning ahead?
Download this video clip.Video player: quilt_of_excellence_animation.mp4
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Transcript

NARRATOR
Our research showed that there are three key aspects involved when providing excellent care to older people with learning disabilities and their family carers. Each aspect is made up of its own unique elements. The result is really good support. We talked about how we could show what this support might look like in a visual way. Our team came up with the idea of a patchwork quilt. We call it the quilt of excellence. A patchwork quilt can be added to and changed over time, developing just like our lives do. A patchwork quilt also shows us how lots of smaller elements work together to make the whole. So our quilt of excellence for older people with learning disabilities and their family carers has three main parts, each with many different patches.
The first is about supporting people to live well as they get older. Through our research, we found that living well when people get older means having a good home, being able to get out and about in the fresh air, enjoying nature and being supported to do the things you really love. Enabling people to sustain relationships with their friends, family members, and support workers as they get older is also really important.
The second key element is supporting people to age well. This is about supporting people with the physical, mental, social and emotional changes related to ageing. It's also about planning ahead. This means really thinking about what happens as people age, paying close attention to their health and well-being and any changes they may be experiencing. It's also about ensuring people are in a home that they can grow older in, and supporting people around issues of death, dying and bereavement.
The third aspect of the quilt is about creating a caring environment for everyone. This involves looking after staff, enabling them to be confident and well trained to provide excellent care as people get older. It's also about helping staff to feel happy and well supported in their work. This is also about looking after family carers, supporting them, really listening to them, and keeping them involved in decisions, and being aware of their changing needs as they too get older. And very importantly, it means making sure the person is in a nurturing environment that respects their human rights, enables people to be supported by people that they like, and by people who like them.
When this patchwork of good practice comes together, we get the quilt of excellence, the best ways to support people with learning disabilities and their family carers as they get older.
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Comment

You can see from the Quilt of Excellence animation that really good support for people with learning difficulties and their carers depends on supporting people to live well as they get older (e.g. having a good home and doing the things they really enjoy), supporting people to age well (e.g. helping them to cope with the physical, mental and emotional changes that take place as we age), and creating a caring environment for everyone concerned (e.g. looking after family carers and making sure the person with learning difficulties is in a nurturing environment).

Our research showed that while excellent does exist it is unfortunately far from universal. There is still much to do in terms of improving policy and practice in this area.