Development of a Quantitative Instrument to Elicit Patient Preferences for Person-Centered Dementia Care Stage 1: A Formative Qualitative Study to Identify Patient Relevant Criteria for Experimental Design of an Analytic Hierarchy Process.

Background: Person-centered care (PCC) requires knowledge about patient preferences. This formative qualitative study aimed to identify (sub)criteria of PCC for the design of a quantitative, choice-based instrument to elicit patient preferences for person-centered dementia care. Method: Interviews were conducted with n = 2 dementia care managers, n = 10 People living with Dementia (PlwD), and n = 3 caregivers (CGs), which followed a semi-structured interview guide including a card game with PCC criteria identified from the literature. Criteria cards were shown to explore the PlwD's conception. PlwD were asked to rank the cards to identify patient-relevant criteria of PCC. Audios were verbatim-transcribed and analyzed with qualitative content analysis. Card game results were coded on a 10-point-scale, and sums and means for criteria were calculated. Results: Six criteria with two sub-criteria emerged from the analysis; social relationships (indirect contact, direct contact), cognitive training (passive, active), organization of care (decentralized structures and no shared decision making, centralized structures and shared decision making), assistance with daily activities (professional, family member), characteristics of care professionals (empathy, education and work experience) and physical activities (alone, group). Dementia-sensitive wording and balance between comprehensibility vs. completeness of the (sub)criteria emerged as additional themes. Conclusions: Our formative study provides initial data about patient-relevant criteria of PCC to design a quantitative patient preference instrument. Future research may want to consider the balance between (sub)criteria comprehensibility vs. completeness.

The situation of elderly with cognitive impairment living at home during lockdown in the Corona-pandemic in Germany.

BACKGROUND: The outbreak of the Corona virus is a challenge for health care systems worldwide. The aim of this study is to analyze a) knowledge about, and feelings related to the Corona-pandemic. Describe b) loneliness, depression and anxiety and, c) the perceived, immediate impact of the lockdown on frequency of social contacts and quality of health care provision of people with cognitive impairment during social distancing and lockdown in the primary care system and living at home in Germany. METHODS: This analysis is based on data of a telephone-based assessment in a convenience sample of n = 141 people with known cognitive impairment in the primary care setting. Data on e.g. cognitive and psychological status prior to the pandemic was available. Attitudes, knowledge about and perceived personal impact of the pandemic, social support, loneliness, anxiety, depression, change in the frequency of social activities due to the pandemic and perceived impact of the pandemic on health care related services were assessed during the time of lockdown. RESULTS: The vast majority of participants are sufficiently informed about Corona (85%) and most think that the measures taken are appropriate (64%). A total of 11% shows one main symptom of a depression according to DSM-5. The frequency of depressive symptoms has not increased between the time before pandemic and lockdown in almost all participants. The sample shows minimal (65.0%) or low symptoms of anxiety (25%). The prevalence of loneliness is 10%. On average seven activities have decreased in frequency due to the pandemic. Social activities related to meeting people, dancing or visiting birthdays have decreased significantly. Talking with friends by phone and activities like gardening have increased. Utilization of health care services like day clinics, relief services and prescribed therapies have been reported to have worsened due to the pandemic. Visits to general practitioners decreased. CONCLUSIONS: The study shows a small impact of the pandemic on psychological variables like depression, anxiety and loneliness in the short-term in Germany. There is a decrease in social activities as expected. The impact on health care provision is prominent. There is a need for qualitative, in-depth studies to further interpret the results.