“A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making

Abstract

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems

“…Sinclair at al. also stress the importance of prompting techniques, such as giving cues or using words like a "little key" to unlock particular memories (105). The use of visual illustrations, aids, and props appears to be also useful in helping a person understand information and making a choice (21,109).…”

“…The fact that, in this historical moment in western societies, the state is disengaging from its obligation to provide care to all their citizens, including those who can count on less financial and human resources within their family, does not mean that neglect and lack of humane care should be accepted or justified. In addition, shared and supported decision-making projects in hospitals and care homes in Italy (23), The Netherlands (23,108), Norway (21), and Australia (105,106) show that it is possible to provide support to the person with dementia at very limited costs by using the people within the person's circle of relationships. Besides, as remarked by Flavin, herself a person with dementia, the cost of providing support for decision-making is often outweighed by the benefits consisting of the person remaining engaged and feeling more fulfilled and confident, thus requiring less care and having a relatively less problematic disease trajectory (124).…”

“…As part of the effort to implement the CRPD, national governments should ensure that such organizations are well-supported and appropriate services exist for people who do not have an extensive support network. In addition, it would be advisable that the person puts in place, in good time, a formal "support agreement" establishing a clear distribution of tasks for the members of their network and, if needed, entrusting external individuals or organizations with the responsibility to support them in making decisions (105).…”

“…Including in this notion also cases in which the decision is made for the person rather than by the person would give the impression of a regulatory model which does not even agree with itself. In addition, there may be cases in which it is the person with dementia who freely wants to delegate the power to make a certain choice to someone else (105). Finally, there might be situations in which the person's will and preferences are expressed in such a way that decisions cannot be made merely on the basis of their best interpretation, but require a certain "creative input" by the support person (8).…”

“…Recent research projects provide some indications of supportive measures which can help people with dementia to make decisions on their care and medical treatment ( 90 ). For example, a successful support strategy reported by a series of studies is that of narrowing down alternatives relevant to a certain choice, as individuals with dementia tend to be confused and overwhelmed when presented with too many options ( 21 , 105 – 107 ). Other generic support means consist of explaining concepts and information in a simpler way which matches with the person's needs (e.g., speaking loudly and clearly, with short phrases, avoiding words the person does not understand) ( 105 , 106 ), giving the person time to process information and not rushing them ( 21 , 62 , 105 – 109 ), clearly defining the question under discussion ( 108 ), and reminding the person of certain information ( 21 , 105 , 110 ).…”