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Caring for home-dwelling parents with dementia: A qualitative study of adult-child caregivers' motivation.

ABSTRACT: Aim:To explore adult children's motivation in caregiving for their home-dwelling parents with dementia. Design:Qualitative design with a phenomenological approach. Methods:Semi-structured individual interviews with 21 adult sons and daughters who were caregivers for a parent with dementia. Data were analysed using systematic text condensation. Results:Inspired by self-determination theory, three categories were identified in the empirical data representing the main motivational drivers for adult-child caregivers: relatedness (to the parent with dementia, the parent's spouse, other persons), competence (in handling dementia, in the parent's need) and autonomy (freedom of choice, innate values and tasks). Caregivers report relatedness as their key motivational driver.These results imply that nurses and other health professionals should value the importance of relatedness when interacting with dementia caregivers and establish belonging support structures. Further research should generate more knowledge of the positive motivational drivers, including interventions to improve relatedness, competence and autonomy.

SUBMITTER: Dombestein H

PROVIDER: S-EPMC7544851 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Caring for home-dwelling parents with dementia: A qualitative study of adult-child caregivers' motivation.

Dombestein Heidi H Norheim Anne A Aase Karina K

Nursing open 20200807 6

<h4>Aim</h4>To explore adult children's motivation in caregiving for their home-dwelling parents with dementia.<h4>Design</h4>Qualitative design with a phenomenological approach.<h4>Methods</h4>Semi-structured individual interviews with 21 adult sons and daughters who were caregivers for a parent with dementia. Data were analysed using systematic text condensation.<h4>Results</h4>Inspired by self-determination theory, three categories were identified in the empirical data representing the main m ...[more]

PMID: 33072381

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Project description:BACKGROUND:As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. METHODS:Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention. RESULTS:We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. CONCLUSION:We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.

Project description:BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

Project description:Background and Objectives:Dementia caregiving has been associated with increased burden, depression, grief, a decreased sense of well-being and quality of life, and a weakening of social support. Little is known about the experience of caregiving in Dementia with Lewy Bodies (DLB). The present study examines differences in the caregiving experience of spouse versus adult child caregivers of individuals with DLB. Research Design and Methods:In this cross-sectional analytic study of spouses (n = 255) and adult children (n = 160) caregivers of individuals with DLB, participants completed an online survey of burden, grief, depression, well-being, quality of life, and social support. Results:Adult child caregivers were more likely to care for women (p < .001) and see the care recipient less often (p < .001) than spouses. Adult child caregivers reported lower quality of life (p < .001) and more caregiver burden (p < .009), but also greater social support (p < .001) than spouses. Between group analyses of caregiver type by disease severity demonstrated that spousal caregivers experience greater grief with advancing disease (p = .005), while adult child caregivers increase social support with advancing disease (p < .001). Discussion and Implications:Spouses and adult children experience DLB caregiving differently. This was explained by the younger age of the adult child caregiver, frequency of contact with the care recipient, and differences in the care recipient's characteristics, frequency of neuropsychiatric symptoms, and disease severity. DLB caregiver support for this population should target psychoeducation for complicated neuropsychiatric symptoms in the care recipient. Screening all DLB caregivers for burden, grief, and depression is suggested to identify those that may benefit most from intervention. Spouses specifically may benefit from interventions that target increasing social support, while adult child caregivers may benefit from interventions aimed at mitigating burden and improving quality of life.

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Caring for home-dwelling parents with dementia: A qualitative study of adult-child caregivers' motivation.

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Caring for home-dwelling parents with dementia: A qualitative study of adult-child caregivers' motivation.

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