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.

Background: Hearing loss is common in people with dementia (PwD) and a modifiable risk factor for cognitive decline. Recent studies revealed that hearing loss could cause social isolation and depression, which is associated with health-related quality of life (HRQoL). However, there is a lack of knowledge about the impact of the utilization of hearing aids on these outcomes. Objective: To assess whether hearing aids use might be positively associated with the progression of cognitive function, depression, and HRQoL among PwD. Methods: We analyzed two-year follow-up data from 258 PwD (≥70 years, living at home). Cognitive decline was measured with Mini-Mental Status Examination (MMSE), depression using Geriatric Depression Scale (GDS), and HRQoL with Quality of Life in Alzheimer’s Disease Scale (QoL-AD). The impact of hearing aid utilization on the progression of outcomes was assessed using multivariate regression models. Results: 123 patients had hearing loss (47.7%), from which n = 54 (43.9%) used hearing aids. Patients with hearing loss were older and had a lower HRQoL than those without hearing loss. Use of hearing aids in patients with hearing loss was associated with a lower increase in symptoms (b = –0.74, CI95 –1.46 ––0.01, p = 0.047) over time as compared to those not using hearing aids. There was no effect on PwD’s cognition, and the association with higher HRQoL was significant after one, but not consistently over two years. Conclusion: Early detection and intervention of presbycusis using hearing aids might improve mental health and HRQoL in dementia.

Background: To provide Person-Centered Care (PCC) for People with Dementia (PwD), patient's stated preferences must be known. Data about stated carepreferences among PwD are limited. This study aimed to identify key components of PCC for PwD by a systematic review of PCC-interventions, to inform the construction of a decision model for PwD-preference elicitation. Method: A protocol was registered with PROSPERO (CRD42021225084). A search of the concepts Dementia, Person-Centered Care, and Intervention was performed in PubMed, EMBASE, and Web of Science in Nov2020. Study selection was based on 2-stage screening against eligibility criteria, limited to randomized controlled trials (RCT) and nonrandomized controlled study (NRS) designs. Risk of bias was assessed with version 2 of the Cochrane risk-of-bias tool for randomized trials (RoB2) and the Newcastle-Ottawa Scale (NOS) for nonrandomized studies. Information about authors, interventions, and outcomes were extracted and entered into an "Effects Table". The identified PCC-interventions were thus synthesized into intervention categories to form key components of PCC. Result: Searches identified 1781 records. 19 studies (15 RCT, 4 NRS) were included after screening. The quality of the studies varied between low to moderate. The individual interventions covered a wide range of non-pharmacological, psychosocial offers, oftentimes bundled in multi-component intervention-sets. Nine intervention categories, i.e. key components of PCC to inform the construction of a decision model for PwD-preference elicitation, emerged from data synthesis: sensory enhancement/relaxation, social contact, cognitive training, validation and reminiscence, physical activities, environmental adjustments, caregiver training and support, care organization and daily living assistance. Effect measures included i.a. agitation, quality of life, antipsychotic use, depression, neuropsychiatric symptoms and behavior, with mixed results concerning the effect of the PCC interventions. All studies were conducted in nursery home or hospital settings.

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.

Background Rapidly increasing healthcare expenditures are a global healthcare challenge. Parts of these costs are caused by an overtreatment of patients or low‐value care (LvC), which is defined as care unlikely to provide a benefit to the patient or likely to provide harm. However, there is currently a lack of evidence about the prevalence of LvC and its association with patient‐reported outcomes in people living with dementia (PwD). Method The analysis was based on the baseline data of the DelpHi‐trial, including 516 community‐dwelling PwD. LvC were identified by a systematic review of dementia‐specific evidence‐based guidelines, "do not do" recommendations of initiatives, like “Choosing Wiseley”, and lists of inappropriate medication for the elderly. The association of LvC treatments with health‐related quality of life (HRQol), assessed by using the SF‐12 and the Quality of life in Alzheimer´s diseases, and hospitalization were analyzed using multiple regression models. Result The study revealed that 159 PwD (31 %) received at least one LvC treatment. They had, on average, less cognitive impairment and less functional impairment than those without LvC. PwD who received LvC had a lower quality of life (b=‐0.08; CI95% ‐0.14 – ‐0.02) and were more likely to be hospitalized (OR=2.11; CI95% 1.30 – 3.41). The lower HRQol was attributed to the measured sedatives and hypnotics (B=‐0.21; CI95% ‐0.34 – ‐0.08). The higher odds for hospitalization could be caused by antidepressants (OR=2.86; CI95% 1.10 – 7.46) and antihypertensive drugs (OR=4.09; CI95% 1.20 – 13.92). Conclusion LvC could reduce patients' HRQoL and increase the risk of hospitalization. More research is needed to evaluate if innovative approaches, like digital health applications, are useful to identify and reduce LvC within primary care and if this could improve PwD HRQoL and reduce hospitalizations.