Objectives COVID-19 has caused many nursing homes to prohibit resident visits to prevent viral spread. Although visiting restrictions are instituted to prolong the life of nursing home residents, they may detrimentally affect their quality of life. The aim of this study is to capture perspectives from the relatives of nursing home residents on nursing home visiting restrictions. Design A cross-sectional online survey was conducted. Setting and participants : A convenience sample of Dutch relatives of nursing home residents (n = 1997) filled in an online survey on their perspectives regarding nursing home visiting restrictions. Methods The survey included Likert-item, multi-select, and open answer questions targeting four key areas: (1) communication access to residents, (2) adverse effects of visiting restrictions on residents and relatives, (3) potential protective effect of visiting restrictions, (4) important aspects for relatives during and after visiting restrictions. Results Satisfaction of communication access to nursing home residents was highest when respondents had the possibility to communicate with nursing home residents by nurses informing them via telephone, contact behind glass, and contact outside maintaining physical distance. Satisfaction rates increased when respondents had multiple opportunities to stay in contact with residents. Respondents were concerned that residents had increased loneliness (76%), sadness (66%), and decreased quality of life (62%) while study respondents reported personal sadness (73%) and fear (26%). There was no consensus amongst respondents if adverse effects of the visiting restrictions outweighed the protective effect for nursing home residents. Respondents expressed the need for increased information, communication options, and better safety protocols. Conclusion and Implications Providing multiple opportunities to stay in touch with nursing home residents can increase satisfaction of communication between residents and relatives. Increased context specific information, communication options and safety protocols should be addressed in national health policy.
Background: Discrete choice experiments (DCEs) may facilitate persons with dementia and informal caregivers to state care preferences. DCEs can be cognitively challenging for persons with dementia. Objective: This study aims to design a dementia friendly dyadic DCE that enables persons with dementia and informal caregivers to provide input individually and jointly, by testing the number of attributes and choice tasks persons with dementia can complete and providing insight in their DCE decision-making process. Methods: This study included three DCE rounds: 1) persons with dementia, 2) informal caregivers, and 3) persons with dementia and informal caregivers together. A flexible DCE design was employed, with increasing choice task complexity to explore cognitive limitations in decision-making. Summary statistics and bivariate comparisons were calculated. A qualitative think-aloud approach was used to gain insight in the DCE decision-making processes. Transcripts were analyzed using thematic analysis. Results: Fifteen person with dementia, 15 informal caregiver, and 14 dyadic DCEs were conducted. In the individual DCE, persons with dementia completed six choice tasks (median), and 80% could complete a choice task with least three attributes. In the dyadic DCE persons with dementia completed eight choice tasks (median) and could handle slightly more attributes. Qualitative results included themes of core components in DCE decision-making such as: understanding the choice task, attribute and level perception, option attractiveness evaluation, decision rule selection, and preference adaptation. Conclusion: Persons with dementia can use simple DCE designs. The dyadic DCE was promising for dyads to identify overlapping and discrepant care preferences while reaching consensus.
Introduction More persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these are valued by community‐dwelling persons with dementia and their informal caregivers. Understanding perspectives of persons with dementia and informal caregivers on care characteristics is a vital step in valuing care services. This study aims to prioritize care characteristics for community‐dwelling persons with dementia and informal caregivers with the use of an innovative mixed‐methods approach. Methods Six mixed focus groups were conducted in The Netherlands with persons with dementia (n = 23) and informal caregivers (n = 20), including a quantitative ranking exercise that prioritized seven care and support characteristics from "most important" to "least important," followed by a group discussion about the prioritization. Audio recordings were transcribed and analyzed using thematic analysis. Results The ranking exercise and discussion showed that persons with dementia favored in‐home care, help with daily activities, and social activities, whereas informal caregivers favored social activities, information about dementia, navigating the health care system, and emotional support. Discussion Persons with dementia prioritized day‐to‐day activities, whereas informal caregivers preferred assistance with organizing care and coping with caregiving. This study created a method to capture the care preferences of persons with dementia and informal caregivers.
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