Serving Diverse Communities: a self-Assessment on Alzheimer’s Disease Services for the Aging Network and Its Partners

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September 2013

Independence & Decision Making:

An Annotated Bibliography

Prepared by the Alzheimer’s Disease Supportive Services Program
National Resource Center


This annotated bibliography provides a summary of articles available on independence and decision-making abilities of patients with dementia. The bibliography is divided into sections by topic:

Assessing Decision-Making Capabilities, which includes articles about efforts to assess dementia patients’ ability to make decisions

Caregiver Involvement, which contains articles about the involvement of caregivers in decision-making regarding people with dementia

Interventions to Increase People with Dementia’s Involvement in Decisionmaking, which contain articles describing various interventions designed to improve a dementia patient’s ability to make decisions and extend independence

Ethical Issues, which contains articles discussing the ethical implications of involving dementia patients in decision-making and in research studies.

The bibliography was developed using electronic searches. Journal articles were searched using MEDLINE. The MEDLINE search terms were: Dementia (Alzheimer Disease) AND early-stage + patient participation + comprehension + standards + early diagnosis + safety management + self-assessment + ADLs + developmental disorders + competency. Grey literature searches were conducted using Ageline and CINAHL, along with searching topic-related Alzheimer’s Association webpages. Google searches were also conducted. The search was limited primarily to empirical papers in English, mostly published within the last 10 years. Articles reporting on research in countries other than the United States and the United Kingdom were generally excluded.

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