Letting go without giving up: Don't Leave It Until the Funeral

How many of us have attended a funeral service and discovered all sorts of interesting things we never knew about the person whose life we are celebrating? This section stresses the importance of letting care home staff know about the person they are caring for, what has made the person; holding on to the person's identity. As the person's memory and ability to communicate verbally get worse, family and friends may be the only ones who can keep alive the knowledge of the person – their likes and dislikes, their memories, their history.

In the past, there was a strong tradition in professional health and social care services to "take over" the complete care of the person going into long-stay care in hospitals and care homes, with family members being viewed as no longer directly concerned with the care of the person. More recently, there has been a move away from this 'paternalistic' approach but this sort of cultural change takes time to develop. Professionals may still be inclined to take over, even in a very well-meaning way, and relatives and friends expect to let them, even if they are reluctant to do so. Relatives may think "They know best" and care home staff may encourage that view, however subtly.

Don't worry, we'll look after him now

On the one hand, this may sound reassuring; on the other hand it may be giving relatives the message that their services are no longer required. More will be said about how such messages can be misunderstood in Section 8 on Communication.

Person-centred care

With the gradual shift away from the paternalistic approach has come the concept of person-centred care. Person-centred care stresses the importance of letting people know about the person; what has made the person; holding on to identity/ sense of self.

In particular, it is:

1. Care that is centred on:
   • the whole person not the diseased brain ;
   • remaining abilities, emotions and cognitive abilities –not the losses;
   • the person within the context of family, marriage, culture, ethnicity, and gender.
2. Care that is centred within a wide society and its values.

How can you as a carer contribute to person-centred care?

Let people know about the person you have cared for; what has made and continues to make the person; how to hold on to the person's identity. Don't leave it until the funeral to tell people about the person's life, achievements, interests, fears and passions. By giving the home as much information as possible, you will help staff understand the person and provide the best quality of care and understanding as possible.

The Care Commission, the organisation in Scotland which registers care homes and oversees standards of care, sets out requirements for the sorts of information that homes should collect about a resident; however, you cannot provide too much detail about the person.

Some of his or her likes and dislikes may seem insignificant but knowing about them could make all the difference to a staff member trying to understand why a resident is reacting in a particular way. This sort of information, together with details of the person's life history and significant relationships, personality, attitudes and values, personal preferences and routines can all be gathered together to form a personal profile which is unique to that person.

Putting together the profile – handy hints

• What was the normal pattern of the person's day before entering the home or further back in their younger days?
• If you send in photographs, write on the back who they are and what is their connection with the person with dementia
• Remember to record information about children and pets
• A loose-leaf binder helps you to add new sections easily
• Consider working with other family members and friends on drawing up the profile –they may be able to contribute additional information from their own relationship with the person.

Drawing up a life history

Methods for doing this vary. Some homes might involve the person's key worker in working with the resident and his or her family and friends to put together an actual life story book. (see Section 7 for more on life story books). In others, the details about the person's life and history are recorded simply as part of the process of "care planning".

Letting go without giving up: continuing to care for the person with dementia