Combining the expertise and knowledge of families and practitioners would benefit everyone

During Carers Week, which runs from 9-16 June, there is a welcome focus on people with caring responsibilities, including those who are supporting someone with dementia.

This week is a good opportunity to highlight the needs of a certain number among this group, who receive little attention: the families of people with learning disabilities who, during the course of their adult life, develop dementia.

The number of families in this position is steadily growing as people with learning disabilities are living longer. More information is now available about how dementia affects the lives of people with learning disabilities; there is better diagnosis, and health interventions, support and living arrangements are improving. But the needs of family carers are often overlooked, even though, for many people with learning disabilities living with dementia, they can make all the difference to getting good support, remaining connected and making the best of life. These carers also need support in their own right to make sense of what is happening: many parents will have spent over 50 years supporting their son or daughter to have a good life and a diagnosis of dementia can be hard to come to terms with. These parents are likely to be in their seventies or eighties; their son or daughter may still live at home or they may still play an important part in their day-to-day life. Alternatively, a sibling may have stepped into the role of main family carer.

It would benefit everyone if the expertise and knowledge of families and practitioners were combined.

Families have a wealth of knowledge about their relative’s life, for example about people and places that have been important, and activities that are calming or bring happiness. They also have an understanding of what works for their relative, what helps to make a day go well, how they communicate, their likes and dislikes. To complement this, practitioners can provide information about the symptoms, stages and likely progress of the person’s dementia, and ideas about how appropriate support can be arranged. Drawing on this combined knowledge and expertise will enable their relative to be supported to live as well as possible with dementia. It will also help reduce the stress and worry family carers experience, as they can be confident they are continuing to shape their relative’s life for the better.

At the end of May, Intellectual Disability and Dementia: Research into Practice was published, bringing together up-to-date information about research and good practice that has been shown to help people with learning disabilities living with dementia get the support they need. I was pleased to be asked to contribute a chapter to the book which was co-written with Heather Wilkinson. In ‘Planning Ahead: Supporting Families to Shape the Future after a Diagnosis of Dementia’, we look at how family carers can be involved, from the point of diagnosis, to plan in a person-centred way to ensure their relative gets the support they need to live with dementia as well as possible.

Here are some of the practical suggestions that can be used by practitioners in health and social care as well as carers’ support services:

  • Support family carers to gather relevant information about their relative using questions such as ‘what makes a day go well’ and ‘what helps to keep them safe and well’.
  • Use a ‘people in my life’ map to identify who is part of their relative’s life and who may contribute in the future either through spending time with them or helping to make decisions about future care and support.
  • Encourage the setting up of a Circle of Support that regularly meets to discuss ideas and put things in place.
  • Provide family carers with easy-to-understand information about best interests decisions and support them to find ways to involve their relative in making decisions.
  • Provide the family with easy-to-understand information about dementia to help them explain to their relative any changes that they may be experiencing.
  • Involve the family in putting together information that helps other people to support their relative to keep safe and well.
  • Provide support to draw up an emergency plan if the person with dementia is living with family carers.
  • Family carers can also use these suggestions to approach their local community learning disability team or carers’ support organisation to ask for the things they need.

    Family carers of people with learning disabilities who develop dementia face many challenges but will be better able to cope if they are given good information and supported to contribute their knowledge and understanding to shape the future for their relative.