The recent article in the journal Dementia, ‘Shared decision-making in dementia: A review of patient and family carer involvement’ (Miller 2014) aimed to identify and analyse all the research studies looking at patient and carer involvement in decision-making in dementia.
The goals of the review were to:
- Review the extent of patient and family carer involvement in decision-making
- Identify factors that prevent or facilitate involvement of people with dementia in decision-making
- Identify the sort of research needed to understand and promote shared-decision making
- Promote the idea that a meaningful role in decision-making need not end when the ability of the person with dementia to make decisions is impaired
The researchers searched for relevant articles in three of the main medical databases. Their search combined three controlled Medical Subject Headings (MeSH headings) which are used to tag articles – ‘Dementia’, ‘decision making’ and ‘patient participation’.
This strategy retrieved 850 unique articles, but it’s possible that un-indexed or incorrectly indexed articles were missed. Articles not written English or published in peer-reviewed journals were not searched for.
Moreover, as only three databases were searched, though extensive, the range of studies considered for inclusion in the review was not comprehensive. It is unlikely to matter a great deal, but this is a common limitation of reviews which is worth considering.
The abstracts of the 850 articles were screened and whittled down to 36. All 36 were reports of observational or experimental studies looking at the involvement of patients and carers in decisions about care.
The 36 studies were described as ‘diverse’ and it would have been helpful to have this diversity illustrated graphically to allow easy comparison of study characteristics such as number of participants, research design, and most importantly, research quality, which will all have a bearing on the reliability and usability of findings.
Preferences and expectations versus reality
In four of the studies researchers asked people with dementia whether they wanted to be involved in decision-making. The overwhelming majority did want to be involved, and preferred to take the lead in making decisions about their own care.
However, other studies showed that the reality was that even when cognitive impairment was mild, only a very small proportion of patients made the final decision over their care. Most of the time there was some sort of process leading to a consensus decision taken with a family carer.
Some studies included descriptions of where family carers made assumptions about the values and preferences of the person with dementia and then made a decision on that basis without consulting them directly.
Without buy-in for a shared-decision making process by the family carer, and without intervention from professionals, it is extremely difficult to achieve meaningful involvement however much the person with dementia may want and expect it.
Factors affecting shared decision-making
The ways in which non-modifiable factors such as the level of cognitive impairment, gender, age and educational level affected shared-decision making were described in some studies.
Only five studies looked at the influence of factors which could be modified, such as poor quality of life, increased carer burden and depression on shared decision-making, and unsurprisingly found they had a negative impact.
One study looked at strategies employed by carers to promote the autonomy of people with dementia, but it did not measure the effect this had on their involvement in decision-making
Types of decision
For everyday care decisions such as eating, socialising, grooming and handling money, seven studies looked at the extent of patient involvement, but only four of those used a recognised scale to measure it in ‘dyads’. (In research jargonese, ‘dyads’ refer to a family carer/patient pair, usually husband and wife or parent and adult child.)
The same number of studies looked at decision-making about medical treatment, and found that although most people with dementia would prefer to be involved in decisions, the majority of family carers indicated that they took these decisions on their own in consultation with physicians.
Only two studies with a combined participant number of 30 looked at the involvement of people with dementia in decision-making about long-term care. Both reported total or near total exclusion of the person with dementia from the decision-making process.
A personal perspective
My mother was diagnosed with vascular dementia in 2011 and my feeling is that her role in decision-making pretty well stopped as soon as her memory, mood and confidence deteriorated dramatically in 2010.
Before her diagnosis, my elderly father was very concerned about the future and his ability to look after her, so moved them both to a nearby retirement apartment complex situated next door to a dementia care home. When they moved there, my mother saw the writing on the wall, and did not like what it said.
The trouble with the theory about promoting shared decision making is that my father is of a generation who persists in thinking that choices are necessarily stark and limited and professional advice is not to be questioned. Despite being highly educated, he is not au fait or interested in psychological theories about the importance of maintaining my mother’s ‘autonomy’ or ‘personhood’. Because of her inability to communicate with him in the way she used to, I don’t think he considers it possible for her values and preferences to be elicited let alone accommodated when making decisions about her care.
The (seemingly) inevitable and much dreaded event has happened. My mother has recently been moved into the dementia home because my father could no longer manage the physical and personal care she needed.
Her (overwhelmingly negative) feelings about the move which she communicated clearly on many occasions were not considered because there were no alternatives expected or offered. I feel – with some guilt at not pushing for it – that there could have been a way of keeping them living together at home, which is what they both wanted. And now it’s too late.
Cut to the chase
My approach when looking at reviews is to try and identify the most reliable evidence about interventions which have the potential to be applied to real-life situations immediately.
In this review there were four studies of interventions. One of those was a pilot randomised trial (Hilgeman 2014) which showed encouraging results for a patient-centred intervention designed to improve emotional well-being and other outcomes including decisional conflict.
The other three observational studies reported promising results for a counselling intervention (Whitlatch 2006 ), an educational intervention (Siverstein 2010), and an intriguingly named communication aid called ‘Talking Mats’ (Murphy 2013). These promising interventions could be developed, and rigorously and independently evaluated to assess feasibility and effectiveness.
Take home message
The main message I took from this review is that the process of sharing decision-making is more important and beneficial to the person with dementia and their family carer than the outcome of the decision.
People with dementia are able communicate their values and preferences even when their ability to make decisions is severely impaired, and cognitive impairment should not be seen as a barrier to involvement.
Call to action
I hope that many practitioners involved in the care of people with dementia will be moved to apply some of the ideas in the review or the included studies in their own practice, or perhaps get involved in a trial evaluating one of the promising interventions.
Needless to say, the Social Care Elf would be very interested in your feedback and reports of positive action taken as a result of reading this – no action too big or too small!
Lyndsey M. Miller, Carol J. Whitlatch, and Karen S. Lyons Shared decision-making in dementia: A review of patient and family carer involvement Dementia. 2014; doi:10.1177/1471301214555542 [Abstract]
Hilgeman MM, Allen RS, Snow AL, Durkin DW, DeCoster J, Burgio LD. Preserving Identity and Planning for Advance Care (PIPAC): preliminary outcomes from a patient-centered intervention for individuals with mild dementia. 2014 http://www.ncbi.nlm.nih.gov/pubmed/24359036 [PubMed]
Carol J. Whitlatch, Katherine Judge, Steven H. Zarit, and Elia Femia: Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia. The Gerontologist (2006) 46 (5): 688-694 doi:10.1093/geront/46.5.688 [PubMed]
Silverstein NM, Sherman R. Taking control of Alzheimer’s disease: A training evaluation. Gerontology & Geriatrics Education. 2010;31:274 288. doi:10.1080/02701960.2010.503136. [Abstract]
Murphy, J., & Oliver, T.M. The use of Talking Mats to support people with dementia and their carers to make decisions together. Health & Social Care in the Community 21(2), 171–180 [PubMed]