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Evidence Summary

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Family members who make decisions on behalf of dementia patients need support to ensure decisions reflect the patient’s wishes, preferences and values   

Petriwskyj A, Parker D, Robinson A, et al.  Family involvement in decision making for people with dementia in residential aged care: A systematic review of quantitative literature  International Journal of Evidence-Based Healthcare. 2014;12(2):64-86.

Review questions

Who makes decisions for people with dementia in residential care, what are family members’ experiences with decision-making in this context, and what are the barriers and facilitators to these decision-making processes?

Background

Ensuring older adults are involved in decisions about their healthcare is important, but can become difficult for people with dementia who are declining mentally.

Family members can act as sources of information as well as surrogate decision-makers for people with dementia, and their involvement is viewed as an essential component of care.

A range of challenges exist for family members who make decisions on behalf of a relative with dementia, and it is important to consider the factors that can shape and hinder the decision-making process.  

How the review was done

15 electronic databases were searched for 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, on family members and healthcare staff caring for them, 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 26 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

Family members are not always involved in decisions about care provided to relatives with dementia, and they are not always aware of their relatives’ preferences.

 There is variation in whether and to what extent shared decisions are made in residential aged-care facilities.

Communication between healthcare staff and family members is important in facilitating family members’ involvement in decision-making.

Family members need support to ensure they feel confident with the decisions they make, and that the decisions reflect the best interests and best outcomes for the person with dementia.

Conclusion

Given the complexity and multiple factors affecting decision-making by family members of patients with dementia living in residential aged-care facilities, greater support is needed for family members to facilitate their involvement and to ensure decisions made reflect the patient’s wishes, preferences and values.




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