The facilitation of user-involvement for people with dementia as experienced by health care professionals: A qualitative study using focus groups

Abstract

Objective:The main objective of this study was to explore how health care professionals experience adaptation of user-involvement for people with dementia receiving health and social care. Method: A qualitative explorative design was used with eight focus groups as the method of data collection. A total of 49 health care professionals were included representing a variety of professions, municipal and specialized health services, and all health regions of Norway. The transcribed focus group interviews were analyzed using qualitative content analysis following six steps to identify categories and the overall theme. Results: Six main categories were identified: 1) facilitation of self-determination, 2) challenges of reduced or lack of awareness, 3) family caregivers' concern and protection, 4) open communication, 5) establishing a trustworthy relationship, and 6) clarifying expectations. To maintain independent lives for people with dementia, health care professionals must facilitate and support shared decision-making using an open and trustworthy communication. Conclusion:To facilitate user-involvement, health care professionals need to develop and implement strategies that consider the perspectives of people with dementia and support the relationship between people with dementia and their informal caregivers.

Maximising the engagement of older people with mental health needs and dementia with social care

“…People with mental health difficulties (including dementia) may have additional reasons for declining care. Some people with reduced awareness and reasoning skills ‘lack insight’ into their own needs (Rokstad et al, 2021 ), and may see any proffered care as an intrusion (and all‐the‐more threatening for being without perceived justification). Lack of engagement with care can also reflect other unmet needs, such as physical discomfort or pain, or be symptomatic of difficulties in communication or caregiver understanding (Kovach et al, 2005 ).…”

There is an I in WE

“…Patients are considered as active participants in the decision-making process 146 and their informal caregivers are involved as advocators in the care process 147 . Interprofessional collaboration improves patient GENERAL INTRODUCTION | 17 safety 148 , improves patient satisfaction 149 , improves care quality 150,151 , increases job satisfaction 149,151 , reduces clinical errors 152,153 , improves communication 154,155 , enhances problem solving 156 , enhances continuity of care 157 , and improves coordination of care 158 .…”

“…These questions could be about living at home (for example about how they experience living at home, and what the person with dementia finds important to feel at home); collecting personal information about the person with dementia (for example exploring whether they have nursing home preferences); conducting advance care planning conversations; and continuously monitoring the home situation together with other healthcare professionals. By anticipation, persons with dementia are still able to discuss their preferences for future care 147 , which allows them to feel that they are in charge of making choices and managing their lives 148 . This is especially important related to a possible future move to a nursing home, which has a major impact on the lives of persons with dementia 5 .…”