Everyday life priorities and health care preferences of patients living with dementia or cognitive impairment: A systematic review

Abstract

Background Gaining knowledge about priorities and preferences of people living with dementia (PwD) might help to individualize and to increase the adherence of treatment and care, both could improve patient‐related outcomes. Therefore, the aim of this study was to systematically identify and summarize preferences of PwD or mild cognitive impairment, considering all relevant aspects of healthcare and daily living. Methods A systematic review of patient preference studies was conducted to assess needs, priorities, and preferences of PwD or mild cognitive impairment using Pubmed and Science Direct. The inclusion criterion was that preferences were elicited directly by PwD. Of 1,103 studies, only 40 met this inclusion criterion. The ICHOM (International Consortium for Health Outcomes Management) value set for dementia was used to systematize the reported preferences of PwD as follows: (a) clinical status, (b) symptoms, functioning and quality of life, (c) and sustainability. Results Twelve studies revealed preferences pertaining to PwDs’ clinical status (a), highlighting that patients prefer to be informed about the diagnosis as early as possible for anticipatory planning of care. Most patients do not want to receive resuscitation, forgoing antibiotics are accepted. In addition, preferences are altruistic: PwD rank being no burden to others higher than being cured. Further, 25 studies reported preferences concerning PwDs’ symptoms, functioning and quality of life (b), demonstrating that PwD are eager to participate in health‐related decisions, especially in decisions about social life and particularly conjointly with their caregivers. Quality of life, patient self‐efficacy and emotional wellbeing were preferred most. Furthermore, institutionalized PwD prefer individualized and person‐centered care, which is commonly missing in nursing homes. Only, three studies elaborated preferences for sustainability (c), revealing that PwD less likely to prefer residential care as compared to persons without dementia. Conclusion A multiplicity of studies about patient preferences in dementia was found, that provide useful insights into the patient, which are not always taken into consideration, yet. Future interventional studies should examine whether including these preferences into treatment and care or daily living might improve their outcomes.

Self-management preferences in patients with mild cognitive impairment: A qualitative study

“…For patients and their families, the most important outcome of care is quality of life, followed by selfcontrol or coping skills for memory impairment (Chong et al, 2014). In addition to this, some patients with cognitive impairment exhibit more altruism, which may influence treatment decisions (Wehrmann et al, 2020). However, research on other selfmanagement tasks and content is lacking.…”