Family members who make decisions on behalf of relatives with dementia need regular opportunities to engage with healthcare staff

Petriwskyj A,  Gibson A,  Parker D, et al.  A qualitative metasynthesis: Family involvement in decision making for people with dementia in residential aged care International Journal of Evidence-Based Healthcare. 2014;12(2):87-104.

Review question

Who makes decisions for people with dementia in residential care, what are their experiences in making decisions, the impact of these decisions, and the processes underlying them (including barriers and facilitators to the process), and what is the influence of collaboration with healthcare workers on the decision-making process?

Background

Involving older adults with dementia in decisions about their healthcare is important to establish a sense of personal identity, citizenship, and autonomy, while empowering them to make choices.

As dementia progresses it becomes more difficult for individuals to participate fully in decision-making processes about their care, and a family member often has to make decisions on their behalf.

The ways in which residential healthcare providers engage with family members and enable their participation in decision-making has important implications for care provision.

How the review was done

15 electronic databases were searched for qualitative studies published in English between 1990 and 2013, and studies were included if they focused on people with dementia living in residential aged-care facilities and/or their family members and healthcare staff, and if they had a particular emphasis on family involvement in decision-making.  

Of the 1,029 studies that were identified in searches, 153 were read in full and 16 of those were included in the review.

The review was funded by the University of Queensland and the University of Tasmania.

What the researchers found

The ways in which family members experience their roles as decision-makers varies, and being involved in the decision-making process can be both empowering and a source of stress.

Family members are faced with a lack of information, time and opportunities to discuss decisions with healthcare staff, which can hinder their involvement in decision-making.

Early consultations and more regular contact between healthcare staff and family members, including ongoing information updates about the status of their relative’s condition and treatment options, may provide solutions to overcome existing challenges.

Conclusion

Regular opportunities for discussion and information sharing with healthcare staff are important to ensure families can successfully participate in decision-making processes that can influence the care of their relatives with dementia.

This summary is based on a review that was determined to be of medium methodological quality based on an assessment using the AMSTAR tool.