How to help people with dementia retain the power of choice

November 15, 2018 by Rebecca Sharp And Zoe Lucock, The Conversation
Which pair? Credit: Monkey Business Images/Shutterstock

Deterioration in the ability to produce complex speech or understand what people are asking, can make it difficult for people with dementia to make choices in conventional ways. It can be simple things like deciding which clothes to wear, or what to have for dinner. But when a person is in the more advanced stages of dementia, and may not be able to speak at all, it can be difficult for those caring for them to work out what their preferences would be.

To help the estimated 280,000 people with dementia who are living in UK care homes, family members are often asked what their loved ones would prefer and notes are made by staff. But we know that people's preferences can change, sometimes on a daily basis, and are hard to predict even by people who know them really well.

Take the example of Mrs Jones. Care workers know that she likes both tea and coffee, but that she prefers tea. If Mrs Jones finds it difficult to tell them what she wants, how will they know that today is the day that Mrs Jones fancies a coffee?

Behavioural researchers have found that one way to figure out what a person would like is to measure how they respond when provided with different options at the same time. For example, to find out whether a person prefers a biscuit or a scone, the two treats are presented together for the person to choose.

As the person making the choice is unable to speak, physical behaviours such as reaching, touching, and picking up the item are watched to find out which they would like. Studies which use this method are usually done with people with in their care home, and tailored to the individual taking part. While the researchers can find out what works best, it also means that people with dementia benefit directly from taking part in the study. Staff are also shown how to find out preferences – leading to immediate improvements in care.

Though it seems like a simple thing to put into practice, this "choice" method is not currently part of the UK care system. However, we have been testing to see whether it could be used in all care homes, to give everyone with dementia more choice in a place where it has traditionally been limited. By observing what people do rather than what they say, care staff can get a more objective idea of what people like, measure their preferences daily, track how they change, and – most importantly – give people with dementia and communication issues more of a voice in their daily lives.

Our work forms part of the first UK project of its kind in the field of behavioural gerontology. The preferences research is part of a series of studies all focused on using behaviour analysis to help improve the quality of life of people with dementia. In addition, students on Bangor University's applied behaviour analysis programme are trained to specialise in this approach with older adults.

Though the project itself is due to go on for another year, we have already confirmed previous findings from US-based care home studies which showed that people with dementia prefer activities over food items when given a choice between them. For example, we found that people chose activities such as jigsaws, crosswords, and crochet over treats such as custard tarts and pork pies.

This might be because one risk for people with dementia in long-term care is that they can spend a lot of time unengaged. It can be difficult to find lots of meaningful activities for care settings, and opportunities for conversation can be reduced. So activities become more valuable because they give people something to do and to talk about with other people, while food might become less valuable due to sensory changes associated with dementia such as changes in ability to taste and swallow.

Putting this into practice, we now know that if a person with dementia is to be given food and activity choices, they should be done separately – rather than at the same time, like the biscuit and scone example – as for taking part in an activity might overshadow a food choice. In the long run, this means that staff don't learn what people's food preferences are, too.

For the next stage of our research, we are going to work with people with developmental disabilities (for example, Down Syndrome) who develop dementia. People with developmental disabilities often develop dementia at a younger age, and are more likely to develop it than those who do not have a developmental disability. They are often diagnosed late, too, due to "diagnostic overshadowing", where changes in behaviour are attributed to their disability rather than dementia.

Previous research has found that people with developmental disabilities will often choose food over activities when a between the two is offered (the opposite of people with dementia). However, no one has yet looked at whether this preference shifts when people with developmental disabilities develop dementia. If we know how preferences change, we can ensure that settings tailor their support.

We all value having choices, and our work is focused on evaluating and developing ways to ensure that people with dementia and continue to be offered choices, even in the smallest of ways.

Explore further: Setting personal goals for dementia care

Related Stories

Setting personal goals for dementia care

October 10, 2018
Dementia is a health condition that affects your memory in ways that can make it difficult to carry out your usual daily tasks. The most common cause of dementia is Alzheimer's disease, which causes abnormal changes that ...

Exercise may lessen fall risk for older adults with Alzheimer's

October 29, 2018
Alzheimer's disease (AD) is a brain disease that causes changes that kill brain cells. AD is a type of dementia, which causes memory loss and problems with thinking and making decisions. People with AD and other forms of ...

Health services must address multiple conditions in dementia care

November 7, 2018
Most people living with dementia also have at least one other health condition, and health services need to adapt to optimise their health and quality of life, a new study concludes.

Just 10 minutes of social interaction a day improves wellbeing in dementia care

July 26, 2018
An e-learning programme that trains care home staff to engage in meaningful social interaction with people who have dementia improves wellbeing and has sustained benefits.

Dementia care improved by just one hour of social interaction each week

February 6, 2018
Increasing the amount of social interaction for people with dementia living in care homes to just one hour a week improves quality of life when combined with personalised care.

Stroke doubles dementia risk, concludes large-scale study

August 31, 2018
People who have had a stroke are around twice as likely to develop dementia, according to the largest study of its kind ever conducted.

Recommended for you

New discoveries predict ability to forecast dementia from single molecule

December 11, 2018
Scientists who recently identified the molecular start of Alzheimer's disease have used that finding to determine that it should be possible to forecast which type of dementia will develop over time—a form of personalized ...

Researchers classify Alzheimer's patients in six subgroups

December 5, 2018
Researchers studying Alzheimer's disease have created an approach to classify patients with Alzheimer's disease, a finding that may open the door for personalized treatments.

Neuroscientists pinpoint genes tied to dementia

December 3, 2018
A UCLA-led research team has identified genetic processes involved in the neurodegeneration that occurs in dementia—an important step on the path toward developing therapies that could slow or halt the course of the disease. ...

Detecting signs of neurodegeneration earlier and more accurately

November 30, 2018
Signs of neurodegenerative diseases, appearing years before the emergence of clinical manifestations, can be detected during the examination of medical samples by means of fluorescence microscopy by using new sensitive and ...

Never-before-seen DNA recombination in the brain linked to Alzheimer's disease

November 21, 2018
Scientists from Sanford Burnham Prebys Medical Discovery Institute (SBP) have identified gene recombination in neurons that produces thousands of new gene variants within Alzheimer's disease brains. The study, published today ...

New information on the pathological mechanisms of Alzheimer's disease

November 21, 2018
Researchers at the University of Helsinki have discovered a mechanism by which harmful tau protein aggregates are transmitted between neurons. Alongside amyloid plaques, tau aggregates in the brain are a significant factor ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.