Carers, Proxies and the Triangle of Care

Working with Carers

It is important to speak with the person with dementia and enable them to make the decisions they can about giving feedback and getting involved.

It is good practice, and compassionate, to involve carers in the care of the person with dementia, with the permission of the person with dementia, where possible. 

In this video from Stories of Dementia, a nurse for people with dementia, Jane, describes how differently she experienced a hospital ward setting when she was personally caring for a loved one with dementia.

Especially in advanced dementia, carers have an important role to play to ensure the person with dementia

• has a good quality of life
• does the things that matter to them
• is able to communicate
• get their needs met.

Carers know the person with dementia well

• how their dementia affects them
  • any personality change
  • any things they particularly like to do
  • how to communicate... 

In this video from Stories of Dementia, Lorraine, a nurse, describes a man living with dementia having trouble being understood until the carer was able to be involved in his care and assessment in hospital. 

Carers should be invited to give feedback on services and experience of the person with dementia

• the service should be aware that carer interests may not be the same as the person with dementia, and of the need to balance the interests of carers and people with dementia.
• The Triangle of Care sets out good practice and self-assessment standards to help hospital, and other settings, to work with carers to understand the experience of the person with dementia. 

What is a proxy and why might they be helpful?

The symptoms of dementia may limit the person with dementia's ability to recall their feelings and experiences from hour to hour and day to day.

• If this is the case, they may not be able to tell other people everything about what's happening and what they would like to be improved. 

A 'proxy' is a person who knows the person with dementia well, is able and willing to provide information about them.

• The proxy needs to have good, current knowledge - so that they can share what they have heard and observed. This can be helpful.

Consider feedback about experience/quality of life from proxies or carers very carefully.

• Research has shown that often proxies/carers perceive quality of life and experience very differently to people with dementia, often more negatively.
• Feedback may reflect the proxy or carer's needs and quality of life, rather than what matters to the person with dementia.

This underlines the importance of involving people with dementia directly, using dementia-friendly methods and environments, wherever possible, not just talking with others about them.