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Health, Sports & Psychology

Dementia care: Doing good or at least no harm

Updated Wednesday 8th April 2015

Family and carers often have to make difficult decisions that affect those suffering with dementia. Find out what decisions are beneficial and what is harmful in this article. 

A woman speaks to her grandmother who has dementia Creative commons image Icon McBeth under CC-BY-NC-ND licence under Creative-Commons license In scene 2 of Louise's story you will have discovered how Katherine feels she is no longer able to look after her mother (Louise) who has dementia, so she makes the difficult decision of placing her into a residential care home as a temporary measure. Louise, however, is keen to get back to her own home and live as she normally as she believes nothing is wrong with her memory. 

Families, friends and health and social care professionals often have to make care decisions that affect those with dementia. In Josie's case, below, you will see the complexities regarding her care and how best to support Josie in her own home. 

Josie's case

Josie is living at home and has moderate dementia. She does not have a live-in carer and is dependent on community carers. Although she can no longer look after the flowerbeds, she likes to sit in her garden to feed and watch the birds. One morning, a regular helper called to do some housework and found that Josie was sitting outside in her chair where she appeared to have been all night. Although it was late spring, it had been a cold night and it took some time to get Josie warm and dry.

The helper called the community nurse for advice. She visited at lunchtime and did not think that Josie needed medical attention. Josie’s care was discussed at the GP practice meeting later that week. There was much concern that Josie was unable to care for herself, and they agreed that without a much higher level of support, she might not be able to stay at home. The choices that they discussed were: to provide night sitters or at least twilight visits to check that Josie was not outside; to provide more intensive care, which would be too costly in the longer term; or, because there were no family carers, to admit Josie to residential care.

How can Josie be supported?

The following are relatively easy to provide while Josie is still able to understand and manage most of her day-to-day needs; they preserve her autonomy and personal freedom as well as her sense of independence and privacy, which maintain her quality of life.

  • Installing discrete webcams might be the modern way to keep an eye on Josie.
  • Birdfeeders in clear view of Josie’s window would allow her to continue to watch the birds feeding at dusk.
  • Modifications can be made to make the home more ‘dementia friendly’ and safer, without going to great expense (e.g. decluttering and removal/updating of appliances that may present a danger, plus mobility or assistive technologies to make tasks easier).
  • Josie already has some regular helpers or community carers, but some increased support in the form of twilight visits to encourage her into bed might be reassuring.
  • A regular evening telephone call, from a family member, friend or community care organisation, might also help to ascertain whether Josie is indoors at night.
  • A portable pendant for an emergency call system, such as provided by Carelink, would enable Josie to get help if she found herself outside in her garden and confused.

Note that the ‘easy’ option of locking Josie inside her home at night is unsafe (fire is an obvious hazard, for example) and could cause psychological disturbance if she were made to feel trapped when she wanted to go out.

Risks

  • Josie’s safety is at risk if she does not have the capacity to evaluate the danger and consequences of her actions; e.g. there is risk of physical harm such as falls or hypothermia if she continues to sit in the garden at night.
  • Without increased support, Josie may not be able to take proper care of herself in terms of, for example, nutrition and personal care.
  • Josie may get depressed or agitated if she feels that she is being supervised or restricted in her own home, and may resent the ‘interference’ of the people sent to support her.

This podcast or article is part of the Dementia care: Louise's story collection and has been produced to give an account of what dementia care is like for the individual, the family and health and social care professionals. 

As an extension of the podcasts, articles and also your own personal experiences, you may like to have your say in our Dementia care discussion forum and hear other users' opinions on the everyday issues that occur with caring for someone with dementia.

 

 

For further information, take a look at our frequently asked questions which may give you the support you need.

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