This blog post will examine a paper by Clive Ballard and colleagues who explored how four interventions helped increase “elf” related quality of life (…geddit?) for people with dementia who live in long-term care (Ballard et al, 2017).

Health Related Quality of Life (HRQL) was measured using an established tool called DEMQOL-Proxy (Dementia Quality of Life Measure) (Smith et al, 2007).

The four interventions used were:

1. Person Centred Care training for care home staff

• Creating an understanding of person centredness in dementia care, how to deliver it and how an individual’s experience and behaviour is related to their well-being.

2. Review of antipsychotic drugs

• Promoting a review of antipsychotic drugs, in line with NICE guidelines (NICE, 2007). NB – NICE guidelines generally advise not prescribing antipsychotics for dementia unless the cause of the symptoms is definite (i.e. you know the drugs will solve the problem), other drugs and interventions are ineffective, and the person is fully aware of the risks involved: faster cognitive decline, stroke, more falls due to the sedative effect, and increased risk of death.

3. Social interaction with pleasant activities

• Providing at least 1 hour a week of social interaction (or 20% more than what the participant was doing at baseline).

4. Personalised exercise plan

• Engaging participants in at least 1 hour of exercise per week (or 20% more than what the participant was doing at baseline).

If you want to know how these four interventions helped to reduce use of antipsychotics and neuropsychiatric symptoms (agitation, depression and psychosis) in people with dementia who live in long-term care, please read Clarissa Giebel’s previous blog on the WHELD 2015 trial Reducing antipsychotic use in people with dementia living in nursing homes for useful background information (Ballard et al, 2015).

Methods

A total of 16 care homes were recruited from London, Oxfordshire and Buckinghamshire and all eligible residents were invited to take part if informed consent could be obtained.

Eight of these care homes were sampled conveniently (i.e. convenient for the researcher) and 8 were sampled randomly, which the reader may want to bear in mind.

All 16 homes were allocated to Person Centred Care training. Then, 8 of these homes were randomly selected to be allocated to another of the three remaining interventions: antipsychotic review, social interaction or personalised exercise plan. This was repeated two more times. Therefore, many homes were allocated to more than one intervention (see table below).

Interventions received by each participating care home

Care Home	Person Centred Care (PCC)	Antipsychotic Review (AR)	Social Interaction (SI)	Exercise (E)
1	✔️	✖️	✖️	✖️
2	✔️	✖️	✖️	✔️
3	✔️	✖️	✔️	✖️
4	✔️	✖️	✔️	✔️
5	✔️	✔️	✖️	✖️
6	✔️	✔️	✖️	✔️
7	✔️	✔️	✔️	✖️
8	✔️	✔️	✔️	✔️
9	✔️	✖️	✖️	✖️
10	✔️	✖️	✖️	✔️
11	✔️	✖️	✔️	✖️
12	✔️	✖️	✔️	✔️
13	✔️	✔️	✖️	✖️
14	✔️	✔️	✖️	✔️
15	✔️	✔️	✔️	✖️
16	✔️	✔️	✔️	✔️

Each intervention lasted 9 months and was delivered by trained therapists alongside two “champions” from staff at each care home. Of course, it was not possible for the care homes or participants to be blinded to the intervention they received.

Care homes that did not complete 9 months were excluded from final analysis. The care home was also included as a stratification variable in final analysis.

Results

The study recruited 277 participants, but only 195 people with dementia took part from start to finish (there was a 30% dropout rate, mostly due to death or because the whole care home dropped out).

Overall, none of the interventions had a noteworthy effect on HQRL. However, there were some interesting findings:

Impact of antipsychotic review

Overall there was a 50% reduction in antipsychotic use, which sounds very good. However, these participants also showed a 4.54-point worsening in their HRQL scores (specifically, because according to their DEMQOL report, after 9 months people with dementia seemed to experience more negative emotion and were less interested in self-care). A worse HRQL is a negative effect that was not anticipated by the authors and it suggests that antipsychotics were withdrawn from people who were benefitting from them. While this is informative, it cannot tell us which people are more likely to benefit from a reduction in antipsychotics in the future; which is an important aim for future research.

Impact of social intervention

A six-point improvement in HRQL was seen in the group receiving the social interaction intervention. Also, in the group receiving both social intervention and the antipsychotic review, there was a 30% reduction in mortality. Interestingly, there was no decline in HQRL in the group receiving both antipsychotic review and social interaction, suggesting that the benefit of social interaction offset any reduction in HRQL from the reduction in antipsychotics.

Impact of exercise plan

No impact on overall HRQL was observed for the exercise intervention.

Limitations

There is a great amount of detail in this study, but there are a few limitations the reader should be aware of, some of which are highlighted by the authors:

• The study was initially only powered to be exploratory. Therefore, there may not have been sufficient participants to accurately analyse the impact of the four interventions on HRQL, without the risk of finding an effect due to chance. The 30% dropout rate of participants may have contributed to this
• It is stated that Person Centred Care was “augmented” during antipsychotic withdrawal. The first paper published from this study (see previous elf blog post) defines these augmentations as principles drawn from the systematic review by Fossey et al (2014) and from NICE guidelines (NICEh, 2007). It’s not clear which principles were used, and whether this was the same across all care homes. The same is true of the social interaction intervention and the antipsychotic review: “supplementary communications skills training” and “additional supporting educational resources” were used respectively but were not precisely defined. Therefore, reproducing these interventions widely may be difficult
• The DEMQOL-Proxy is delivered by interviewing a friend or relative of the person with dementia, or a member of care home staff, not the person with dementia. There could therefore be some bias in the responses collected, and the interviewee may have different perspectives on quality of life compared with the person who has dementia themselves (Robertson et al., 2017)
• The authors report several grants and/or personal fees from pharmaceutical companies who sell antipsychotics.

Implications for practice

As our population ages, a system for managing neuropsychiatric symptoms is becoming increasingly necessary. Managing these symptoms effectively could help delay institutionalisation of people with dementia (Livingston et al., 2017) and thus reduce the need for antipsychotics in long-term care settings.

Psychosocial interventions could potentially be used to complement a lower dose of antipsychotic drugs, with no detrimental effect on quality of life of the person with dementia. Interventions like the ones described in this paper are markedly cheaper and easier to deliver than antipsychotic drugs, have no known negative side-effects, but have huge potential to increase the quality of life of people with dementia living in long term care. Further exploration of psychosocial interventions in such complex environments would be a beneficial direction for future research in dementia care.

Conflicts of interest

None

Links

Primary paper

Ballard C, Orrell M, Sun Y, Moniz-Cook E, Stafford J, Whitaker R, Woods B, Corbett A, Banerjee S, Testad I, Garrod L, Khan Z, Woodward-Carlton B, Wenborn J, Fossey J. (2017) 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. Int J Geriatr Psychiatry. 2017 Oct;32(10):1094-1103. doi: 10.1002/gps.4572. Epub 2016 Sep 19. [PubMed abstract]

Other references

Ballard C, Orrell M, Zhong SY, Moniz-Cook E, Stafford J, Whittaker R, Woods B, Corbett A, Garrod L, Khan Z, Woodward-Carlton B, Wenborn J, Fossey J.  (2015) Impact of Antipsychotic Review and Nonpharmacological 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. American Journal of Psychiatry 2015 http://dx.doi.org/10.1176/appi.ajp.2015.15010130

Reducing antipsychotic use in people with dementia living in nursing homes

Fossey, J., Masson, S., Stafford, J., Lawrence, V., Corbett, A., & Ballard, C. (2014). The disconnect between evidence and practice: a systematic review of person-centred interventions and training manuals for care home staff working with people with dementia. International Journal of Geriatric Psychiatry, 29(8), 797–807.

Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S. G., Huntley, J., Ames, D., … Mukadam, N. (2017). Dementia prevention, intervention, and care. The Lancet, 390(10113), 2673–2734.

NICE (2007). The NICE – SCIE Guideline on supporting people with dementia and their carers in health and social care. National Collaborating Centre for Mental Health.

Robertson, S., Cooper, C., Hoe, J., Hamilton, O., Stringer, A., & Livingston, G. (2017). Proxy rated quality of life of care home residents with dementia: a systematic review. International Psychogeriatrics, 29(4), 569–581.

Smith SC, Lamping DL, Banerjee S, Harwood RH, Foley B, Smith P, Cook JC, Murray J, Prince M, Levin E, Mann A, Knapp M. (2007) Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychol Med. 2007 May;37(5):737-46. Epub 2006 Dec 19. [PubMed abstract]

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