Priorities and Preferences of People Living with Dementia or Cognitive Impairment – A Systematic Review

BACKGROUND: Knowledge about the priorities and preferences of people living with dementia (PwD) might help to individualize treatment, care, and support, which could improve patient-related outcomes. This study aimed to summarize preferences of PwD or people with mild cognitive impairment (MCI), considering all relevant aspects of health care and everyday life. METHODS: We conducted a systematic literature review and included studies about patient preferences published in English between January 1, 1990 and October 28, 2019. The inclusion criteria were that preferences were elicited directly by PwD or patients with MCI. We used the International Consortium for Health Outcomes Management value set for dementia to categorize the preferences into the following topics: a) clinical status, b) symptoms, functioning, and quality of life, and c) sustainability of care. RESULTS: Of 578 initially identified studies, 45 met the inclusion criteria. Patients preferred to be informed about the diagnosis as early as possible, especially for anticipatory care planning. They ranked caregiver quality of life as their highest priority. They preferred not to be a burden to others more than their caregivers’ mood, their own functional status, or their own distressing behaviors. Furthermore, PwD are eager to participate in medical decisions, especially in those about creating an everyday life routine. PwD preferred their own quality of life, self-efficacy, and emotional well-being. Institutionalized PwD preferred individualized and person-centered care. According to the sustainability of care, PwD preferred to maintain close bonds with their family at the end of their life and wanted to be treated with empathy. CONCLUSION: This systematic review provides essential insights into cognitively impaired patients’ preferences, which are rarely considered in treatment, care, and support services. Further studies should evaluate whether considering preferences in treatment and care or daily living can improve patient-reported outcomes.