What People with Dementia Want from Long Term Care Facilities

Christine Kennard Health Pro
  • Seeking a Meaningful and Purposeful Life

    Most of us seek a meaningful and purposeful life. For many people with dementia however, care facilities seem geared more towards survival than making quality of life paramount. Research by E Barnett, from her conversations with people in Day Centers, show that they had three main preoccupations; home, loss and making a contribution. So often, people in various care facilities are the recipients of regimes that do not take into account the wishes of their users. Because people with dementia are often seen as primarily damaged individuals, it allows staff to decide what they think is important for them and consultation is often minimal at best.

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    Autonomy improves quality of life in long term care. Encouraging any type of decision, whether small or large, gives people with dementia a sense of control over themselves and their environment. Giving them the right to decide what time they get up makes a big difference to their lives. However, often the reality is that the perceived needs of the institution override the needs of the individual.


    When I worked in care homes the ability for residents to make decisions was a rare luxury. The ‘total institution' approach to care described by world famous social scientist Irving Goffman in his book Asylums was, and is still, alive and well! The financial considerations of care and the need for economy and profit take away, or at least severely reduce, autonomy and decision making.


    Caregivers Acting as Advocates  

    Relatives can make a big contribution in this area by allowing their loved one time to express their needs before passing on their messages to the managers of the homes and day centers. Making sure a loved one is not made to get up too early unless they want, giving people with Alzheimer's a voice, is one of the most valuable roles a relative can do.



    Friendship is also important to people with dementia in care homes yet not a lot of research has been done to investigate it. Most nurses will be able to tell you about friendships that occur in the homes. I can remember a number of relationships where two people would follow each other around the corridors for hours. Their conversations were minimal, but they often seemed to be about doing something, going somewhere, giving their wanderings purpose. They would stop to investigate noises and have brief interactions with other residents. Friendships give meaning and purpose.


    Making a Contribution

    In Barnett's research she found people with dementia placed value on making a contribution, helping other people out. When you think of it that is what most people value. For people in care homes it allows them to return to the valuable roles they had prior to becoming a resident. Cheering up others, using talents for joke telling, playing a piano, singing, helping others with choosing and eating food gives life meaning. Having staff who can identify, encourage and utilize those roles is priceless.


    E Barnett (1997) A Window of Insight Into Quality Care. Journal of Dementia Care 

Published On: April 29, 2011