This paper by Clive Ballard and colleagues addresses several important questions: Can a non-drug programme help improve quality of life for people with dementia in care homes? Can it have a positive impact on agitation and reduce use of antipsychotics? Is it financially effective for care homes to implement a programme like WHELD?
The WHELD programme consists of four interventions:
- Person-centred care (PCC) training for staff
- Encouraging a review of antipsychotic drugs
- Social interaction intervention for residents
- Using PCC training to help residents who are distressed
WHELD was trialled against treatment as usual (TAU) in an RCT across 69 UK care homes.
The main outcome in this most recent paper was to examine the effect of WHELD on:
- Quality of life
There were many secondary outcomes:
- Neuropsychiatric symptoms
- Antipsychotic use
- Global deterioration
- Unmet need
- Quality of interactions
- Cost of interventions in comparison to TAU.
At the end of 9 months, all above outcomes were compared in the WHELD and TAU groups.
The methods used in this paper seem rigorous and comprehensive. Participating care homes were clearly defined as those with more than 60% of residents with dementia, and care homes were randomised to receive WHELD or TAU. Care homes were grouped into “clusters” and each cluster had equal numbers of homes assigned to both WHELD and TAU (although it’s not immediately clear how many care homes were allocated to each). Researchers assessed participants at baseline using well validated scales (different scales for each outcome) and different researchers assessed participants again at 9 months. Great care was taken to ensure research assistants were not unblinded by therapists or care home staff.
The WHELD group showed significant improvement on quality of life (the primary outcome) after 9 months compared to TAU (p=0.0042).
Among secondary outcomes, WHELD groups showed significant improvement on:
- Reduction in agitation compared to TAU (p=0.0076)
- Reduction in overall neuropsychiatric symptoms compared to TAU (p=<0.001)
- A 19.7% increase in the proportion of positive care interactions, compared to the TAU, in 62 care homes (p =0.03)
However, there were no differences between the two groups at 9 months for:
- Antipsychotic use
- Global deterioration
- Unmet need
It is somewhat surprising that no difference was found in antipsychotic use. Especially considering that in the 2017 paper, person-centred care plus review of antipsychotics resulted in a reduction of antipsychotics prescribed (with no negative side effects in groups receiving a simultaneous social interaction intervention). The authors attribute this in part to low levels of initial antipsychotic use in the care homes and in part to lack of training of primary care staff; as that was not part of this RCT.
There are three papers that have come out of WHELD, all looking at people with dementia living in long term care – it can be confusing. (Happily, all three have been summarised in blog posts on the Mental Elf, linked in the table below). As a brief reminder:
|Papers that use data from WHELD (Ballard et al)||Primary outcomes||Secondary outcomes|
Impact of antipsychotic review and non-pharmacological intervention on antipsychotic use, neuropsychiatric symptoms, and mortality in people with dementia living in nursing homes: A factorial cluster-randomized controlled trial by the Well-Being and Health for People With Dementia (WHELD) Program
(In 16 care homes)
|Antipsychotic use, agitation, depression||Neuropsychiatric symptoms, mortality, dementia severity|
Impact of antipsychotic review and non-pharmacological intervention on health-related quality of life in people with dementia living in care homes: WHELD—a factorial cluster randomised controlled trial
(In 16 care homes)
|Heath-related quality of life||None mentioned|
|2018 (this paper)
Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial
(In 69 care homes)
|Quality of life||Agitation, neuropsychiatric symptoms, antipsychotic use, global deterioration, mood, unmet need, mortality, quality of interactions, pain, cost effectiveness of interventions
Secondary data analysis
Data were also analysed according to the severity of the dementia in participants. This analysis found that the WHELD intervention was more helpful for people with moderately severe dementia regarding the primary outcomes (it was not as significant for people with ‘mild-moderate’ or ‘severe’ dementia).
This was an interesting outcome to include, as cost effectiveness has become so important in health and social care.
‘Costs’ were split into 3 categories:
- Accommodation (weekly care home charges)
- Use of social care services (i.e. time in hospital, A&E, primary care)
- Intervention charges (WHELD champion time and training)
Financial information was gathered on each participant in the 3-months prior to the start of the intervention and used to estimate overall costs of that participant.
Compared to TAU, implementing WHELD in this trial saved £4,740 per care home over the course of 9 months – particularly for primary care, emergency and total health and social care costs. However, in accommodation, hospital and community health costs, WHELD was more expensive.
WHELD had a significant effect on quality of life, agitation and overall neuropsychiatric symptoms, yet the authors conclude that the effect size of the interventions is quite small, and future research should focus on more clinically significant effects.
Strengths and limitations
- It’s unfortunate that there were more adverse events (i.e. dehydration, falls, strokes) in the WHELD group compared to the TAU group. However, the difference was not found to be significant and so no further detail is included
- It is good to see that missing data was imputed for participants who did not complete the whole 9 months
- The 69 care homes were all from London or Buckinghamshire; a drawback could be that these care homes are not representative of the UK
- All severities of dementia were included in this trial, which is great, as often those with severe dementia are under-represented in clinical trials.
A final limitation to be aware of is that the sample size at final follow up (553) was less than the minimum sample needed (640) to be sufficiently powered at 90%. This rate of attrition is not altogether surprising as the population is an incredibly frail group, however it may mean the study is not sufficiently powered.
Implications for practice
The reduction in neuropsychiatric symptoms (NPS) alone has great implications for practice; we know that agitation in care home residents with dementia is correlated with lower quality of life and prescription of antipsychotics (Livingston et al., 2017).
It would be interesting to hear opinions of the staff who took part in the interventions. The authors highlight that sustainability is crucial to long-term success of any intervention, and support from staff is an integral part of this. However, sustainability would also rely heavily on workforce enthusiasm, which may not be guaranteed in an environment of frequent staff turnover, zero-hour contracts, low pay and competing priorities. However, this is an issue worthy of a blog post in itself (why not write one yourself or read these posts by Jo Moriarty and Jill Manthorpe).
Overall, this is a strong contribution to a body of literature about the benefits of non-pharmacological interventions in long-term care, and how they may have potential to save money in the long run – long may such research continue.
Conflicts of interest
Ballard, C., Corbett, A., Orrell, M., Williams, G., Moniz-Cook, E., Romeo, R., … Fossey, J. (2018). Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial. PLOS Medicine, 15(2), e1002500. https://doi.org/10.1371/journal.pmed.1002500
Livingston, G., Barber, J., Marston, L., Rapaport, P., Livingston, D., Cousins, S., … Cooper, C. (2017). Prevalence of and associations with agitation in residents with dementia living in care homes: MARQUE cross-sectional study. BJPsych Open, (3), 171–178. https://doi.org/10.1192/bjpo.bp.117.005181