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An evidence-based programme for care home residents living with dementia improved their quality of life and reduced agitation and other symptoms of dementia. A major study across the UK found that the Well-being and Health for People Living with Dementia (WHELD) programme was effective and cost less to deliver than usual care.

The WHELD programme supports care home staff to deliver patient-centred interventions for residents with dementia. It seeks to reduce reliance on antipsychotic drugs and uses social interaction, personalised activities and exercise to improve care.

Most person-centred interventions used in care homes are not based on scientific evidence. WHELD was tested in a large clinical trial, which showed that it improved quality of life for people with dementia. The programme also reduced agitation and the overall burden of neuropsychiatric symptoms such as depression or aggression.  A reduction in the number of hospital and GP visits made the approach less expensive to deliver than usual care.

What’s the issue?

A third of people with dementia in the UK (288,000) live in care homes. Those in care homes tend to have more severe dementia than those living in the community. Agitation and a range of other behavioural and psychological symptoms make it challenging to care for these people.

Person-centred care is the gold standard of care for people with dementia. Yet previous research has found that many care home residents have as little as two minutes of social interaction each day. There is currently no effective, evidence-based intervention to help staff care for these patients without using drugs.

In the first stages of this programme, researchers reviewed 40 studies on psychosocial interventions for people with dementia in care homes. These studies supported the use of person-centred approaches such as reminiscence therapy, in which photographs or other mementoes are used to help someone recall life events and memories. Walking, seated exercise, circle dance or other pleasant activities of the person’s choice were also found to help.

The researchers then looked at training manuals for person-centred care in dementia. Only four out of 170 manuals described interventions with proven benefits.

The team developed the first version of the WHELD programme based on the most practical and effective therapies. It combined person-centred care, management of agitation and non-drug approaches. A first randomised controlled trial tested this version of WHELD in 16 care homes over a period of nine months. It found that reviews of antipsychotic medication halved the use of these drugs. This increased the behavioural and psychological symptoms of dementia unless the medication review was combined with personalised activities. The combination of review plus social interaction significantly improved quality of life and reduced the risk of dying among people with dementia by 30%.  Exercise reduced symptoms of agitation.

What’s new?

The team used information from their previous work to develop the final version of the WHELD programme. It includes training in person-centred care training, antipsychotic review by GPs, social interaction, and exercise. Two ‘care staff champions’ at each home were trained to take simple measures such as talking to residents about their interests.

This second randomised controlled trial evaluated the final version of WHELD in 69 care homes. 553 residents completed the nine-month study. Researchers discussed the programme with 47 care home staff after the intervention had concluded.

The researchers found that, for care home residents with dementia, the programme led to:

  • significant benefits in quality of life
  • a reduction in agitation
  • a reduction in neuropsychiatric symptoms such as depression
  • improvement in quality of care, with residents experiencing fewer emergency hospital admissions and fewer GP visits.

Over the nine months of the study, running the WHELD programme led to an average cost saving of £4740 per care home, compared with usual care. That became a cost saving of £2000 once the cost of delivering WHELD was taken into account.

The benefits were greatest in people with moderately severe dementia. There is further work to do to identify the best ways of supporting people with severe and profound dementia. However, unlike in the first trial, the programme did not reduce the use of antipsychotics. The researchers suggest this may be because far fewer participants were taking antipsychotics when the study started, or because the education programme for GPs was more limited. It emphasises the importance of primary care involvement.

Why is this important?

The person-centred WHELD programme improves care for people with dementia.

The study provides evidence-based information about the best way to provide training and support for care home staff. Such training programmes need a period of four to nine months to embed learning into practice.

The programme demonstrates the value of social interaction and personalised pleasant activities in caring for people with dementia.

The findings also support the judicious use of antipsychotics. The researchers recommend that prescribers balance potential harm against the benefits. They should also take the potential impacts of drug withdrawal into account.

What’s next?

The findings have already been widely disseminated at conferences, in publications, and with care home staff. The team have run workshops for GPs and created an e-learning module for the British Medical Journal learning portal.

NHS England has updated national guidelines on the behavioural and psychological symptoms of dementia management.

The researchers have further funding to develop a COVID-specific version of the WHELD programme. This will use virtual coaching and use digital platforms to share best practice between staff and managers of different care homes.

The effectiveness of the WHELD programme has been proven over a nine-month period. But its longer-term sustainability and impact on residents should be examined.

You may be interested to read

The full paper: Ballard C, and others. Improving mental health and reducing antipsychotic use in people with dementia in care homes: the WHELD research programme including two RCTs. Programme Grants Appl Res. 2020;8

The WHELD programme website: Help us Shape the Future of Care

Video about the WHELD programme, including interviews with care home staff.

A recent trial of a digitally adapted version of the WHELD programme: McDermid J, and others. A Randomized Controlled Trial of a Digital Adaptation of the WHELD Person-Centered Nursing Home Training Program. Journal of the American Medical Directors Association 2022;23:7

Funding: This research was funded by the NIHR Programme Grants for Applied Research (PGfAR) programme.

Conflicts of Interest: Several authors have received fees and funding from various pharmaceutical companies.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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Study author

It’s bad enough that we don’t have better drugs for people with dementia. But in the case of personalised care, we know what to do and yet we can’t make the system deliver what’s needed. This is partly because at the moment there’s no requirement for training to be evidence-based. And so our programme has to have a similar cost to others, even though it’s deeply researched and proven to work.

The cost savings in the WHELD programme are to the health system generally. In the real world, the cost would be to the care home. So we’ve been developing a blended model that uses more digital and virtual supervision to deliver the same core content at a lower cost. With the increased emphasis on digital resources as a result of COVID, I believe we can make the programme affordable for care homes.

In parallel, we’re trying to persuade commissioners to commission the programme. We’re going to try extremely hard to make that happen.

Clive Ballard, Professor of Age-Related Diseases, University of Exeter

Member of the public

It should be reasonably straightforward to make the sector aware of the WHELD programme and its findings. But care home staff are always hard-pressed – and even more so at the present time due to COVID-19. Ultimately, implementation is likely to be dependent on available resources rather than having to convince people of the programme’s desirability.

It will take government funding for the sector, improved pay and promotion structures for staff, and the ability of care homes to operate without being on a financial knife-edge.

John Chapman, Hereford

Pharmacist Researcher

This paper gives weight to the concept of complex interventions involving a wide range of stakeholders to produce positive health improvement and social care outcomes.

The team approach moves away from the single intervention of deprescribing of antipsychotics. It drives empowerment and helps deliver the NHS Long Term Plan for personalised care.

This type of complex intervention relies upon accessing and sustaining an appropriate mix of skills amongst care home staff.

Danielle Adams, Independent Specialist Mental Health Pharmacist and PhD student, University of Warwick

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