Care home staff spent 60 minutes a week with each patient, talking to them about their lives and interests, and tailoring activities to things they enjoy.
Managing and providing a better quality of life for the estimated 850,000 people with dementia in the UK is a significant challenge. It's not easy to treat the agitation or distress that often accompanies dementia. Antipsychotic medicines may have some impact, but they have significant side effects and have not been shown to improve quality of life.
This study tested the effects of training care home staff in a personalised care programme called WHELD (Wellbeing and Health for people with Dementia). They then compared quality of life, agitation and other dementia symptoms in homes where staff had received WHELD training with homes that continued with care as normal.
Although the effects of the programme were small, they were as good as or better than those shown by medication – and without the side effects.
Where did the story come from?
The study was carried out by researchers from the Alzheimer's Society, Bangor University, Exeter University, King's College London, the London School of Economics, Oxford Health NHS Foundation Trust, University College London, the University of Hull and the University of Nottingham.
Funding came from the National Institute for Health Research, South London and Maudsley NHS Trust, King's College London and Care South West Peninsular. It was published in the peer-reviewed journal PLOS Medicine and is free to read online.
The Daily Express, and several other reports in the UK media, said the study showed that "chatting for just an hour a week" improved the lives of people with dementia. This is slightly misleading because, while social interaction was a part of the study, the intervention stressed the need to base conversations and activities on individual interests and preferences.
What kind of research was this?
This was a cluster randomised controlled trial where nursing homes were randomly assigned to either receive staff training in personalised care or to continue giving care as normal.
Researchers wanted to look at quality of life, levels of agitation and cost of implementing the WHELD programme compared with usual treatment, and randomised controlled trials are the best way to test the effect of an intervention.
What did the research involve?
The researchers recruited 69 nursing homes located in the south of England. All residents with a dementia diagnosis in the homes were offered the chance to take part in the study, with next of kin giving consent if the person with dementia was unable to do so.
Half of the care homes were randomly assigned to WHELD training and half to continue treatment as usual. The participants were examined at the start and end of the study using standardised questionnaires to assess symptoms, quality of life and agitation.
Care homes assigned to WHELD had 2 staff members trained as "champions" who then taught other staff in the homes. The champions were responsible for putting WHELD care plans in place for the study participants. These had to include at least an hour a week of personalised interaction and activities.
It's difficult to measure the quality of life of people with dementia, but the researchers used a validated questionnaire completed with the help of a care giver, the DEMQOL-Proxy.
They also measured the cost of training and putting care plans in place, and the overall costs of care for residents in both the WHELD and treatment-as-usual care homes.
The researchers measured differences in dementia, quality of life, agitation and other scores at the start and end of the study between people in the WHELD programme and those who had treatment as usual. They also looked at whether use of antipsychotic drugs changed.
The figures were adjusted for potential confounders.
What were the basic results?
The researchers randomised 847 people with dementia to take part in the study. Only 553 had follow-up data after 9 months – mainly because of participant deaths, which were fairly evenly divided between the two groups.
People with dementia who had taken part in the WHELD programme showed:
- a small increase in quality-of-life scores compared with those receiving treatment as usual
- a small decrease in agitation, while those who had treatment as usual had a small increase
- a small improvement in symptoms of dementia, while symptoms got worse for those who had treatment as usual
The cost of implementing the WHELD programme was £8,627 per home. However, people with dementia in the treatment-as-usual care homes had higher accommodation and healthcare costs, meaning the costs for the people taking part in WHELD were lower overall.
The researchers found no change in use of antipsychotic drugs between WHELD and treatment as usual but noted this may have been because use of antipsychotics was already low in all homes at the start of the study.
How did the researchers interpret the results?
The researchers said: "Whilst the effect sizes were small, the benefits [of the WHELD programme] in agitation and neuropsychiatric [mental health] symptoms were comparable to or better than the benefits seen with antipsychotic drugs."
They said the model "can readily be implemented in nursing homes" and that including social interaction and pleasant events into people's care through the WHELD programme "enables straightforward implementation of these approaches in clinical and care practice".
They added that one challenge of implementing WHELD would be to ensure it was "firmly embedded within the care home culture", especially in homes where staff turnover is high.
The agitation that accompanies dementia can be upsetting for patients and their families, and this well-conducted study is a step forward in addressing that.
Although the size of the effects on people's quality of life and agitation was small, it was the first sizeable randomised controlled trial to successfully introduce a programme of personalised care for dementia. As the authors pointed out, the programme performed at least as well as antipsychotic drugs, which have significant side effects.
However, the study did have some limitations:
- the effects of the programme were small
- there is some uncertainty about how well questionnaires can measure the quality of life of someone with dementia
- 294 participants did not have follow-up data, most likely because of the high death rate among elderly people with dementia
- it's unclear why healthcare and accommodation costs differed between people having usual care and people having WHELD treatment, so we can't say that treatment reduced healthcare costs
It may seem obvious that treating people as individuals, talking to them about their interests and their lives, and tailoring activities to things they enjoy would have a positive effect on their lives – and it's perhaps sad that it takes an academic study to demonstrate that this approach is worthwhile. However, the study could prompt more widespread adoption of this style of caring for people with dementia.