Brothers and sisters sharing in the care of a parent with dementia.

Brothers' and sisters' experiences providing care to a parent with dementia differ, but little is known about how mixed-gender siblings share their caregiving responsibilities or how sharing affects their relationship. This study aimed to explore mixed-gender siblings processes for distributing caregiving tasks when caring for a parent with dementia and the impact of sharing care on their relationship. This descriptive qualitative study recruited fourteen English-speaking mixed-gender sibling pairs caring for a parent with dementia. Online open-ended surveys and individual semi-structured interviews were completed. Interviews and surveys explored division of caregiving responsibilities, conflict resolution, and the effects of sharing care on sibling relationships. Thematic analysis was used to analyze the qualitative data. Five themes were identified: goal of shared caregiving is to meet parents' needs, sisters often take the lead, practical issues affect sharing of caregiving activities, personal resources or skills affect division of responsibilities, and shared caregiving influences relationship quality. Understanding how siblings share caregiving responsibilities can inform the practices of healthcare professionals who care for people with dementia and their family caregivers.

A grounded theory study to identify caregiving phases and support needs across the Alzheimer's disease trajectory.

PURPOSE: Caregivers of individuals with Alzheimer's disease require support across the full disease trajectory. The aim of this study was to develop a conceptual framework of caregiving phases across the Alzheimer's disease and caregiving trajectories and the corresponding caregiver support needs. MATERIALS AND METHODS: Constructivist grounded theory informed data collection and analysis. 40 spousal (n = 20) and adult children (n = 20) caregivers were interviewed. Recruitment was completed when theoretical saturation was achieved. Member-checking interviews occurred with 10 participants. RESULTS: Participants described five phases of caregiving related to their responsibilities to support people with Alzheimer's disease including monitoring initial symptoms, navigating their diagnosis, assisting with instrumental activities of daily living, assisting with basic activities of daily living, and preparing for the future. Support (i.e., informational, emotional, instrumental, and appraisal) needs were often specific to the phase of care. For example, during the initial symptoms phase, caregivers reported needing information to assist them to distinguish normal aging from cognitive impairment. In contrast, during the preparing for the future phase, caregivers emphasized support for accessing institutional long term-care placement. CONCLUSIONS: Findings highlight caregiver-identified phases of caregiving and corresponding support needs across the Alzheimer's disease trajectory. Findings can inform the development, evaluation and implementation of programs and services to meet caregivers' changing needs across the disease trajectory.IMPLICATIONS FOR REHABILITATIONCaregivers for individuals with Alzheimer's disease can experience distinct caregiving phases across the disease trajectory with corresponding support needs.Rehabilitation clinicians can use these findings to help caregivers navigate available supports at appropriate times to ensure that their needs are addressed across the disease trajectory.Occupational therapists and other rehabilitation professionals can enable caregivers with timely education and support as they progress across the disease trajectory.

Caregivers' decision-making for health service utilisation across the Alzheimer's disease trajectory.

Health and social care services can enhance the community experiences of people with Alzheimer's disease and their caregivers but making decisions about service use is complex. Using a grounded theory methodology, we explored service use decision-making in 40 spousal and adult children caregivers for people with Alzheimer's disease across the caregiving and disease trajectory. Participants' perception of their initial service interactions influenced their decision-making process and use of services. Difficulties navigating the healthcare system and finding available services also influenced decision-making. Caregivers make decisions to sustain care in the community that change throughout the caregiving and disease trajectory. Two key factors influence service use (a) the goals of caregiving and (b) the practicalities of accessing services. Both factors change across caregiving phases. By expanding our understanding of how caregivers make service use decisions, we can augment future practice to help caregivers access services that can better support them across the disease trajectory.

A qualitative exploration of how gender and relationship shape family caregivers' experiences across the Alzheimer's disease trajectory.

Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer's disease. Forty spousal (10 husbands and 10 wives) and adult children (10 sons and 10 daughters) caregivers to persons with Alzheimer's disease were interviewed using a semi-structured interview guide. Our findings suggest the experiences of caregiving, examined through a gender and relationship type lens, are complex and variable. The caregiving experience was not related to gender or relationship type alone, but often to a combination of the two. For instance, spousal caregivers did not immediately accept the diagnosis, with wives being more optimistic than husbands about a slow progression of the disease. Adult children caregivers were concerned about the ways the caregiving role would impact their personal and career obligations and sought ways to mitigate the changes to their daily lives. Sons and husband caregivers largely utilized home and community health services to assist with personal care tasks, whereas daughters and wives utilized the same services to allow them to complete other caregiving tasks (e.g., housekeeping). Recognition of the complex inter-relationships among gender and relationship type on caregiving experiences supports the need for family-centered interventions. This article also extends sex and gender research as it highlights that an in-depth understanding of the caregiving experience cannot be understood by gender alone and relationship type must also be considered.

Daughters' experiences of shared caregiving to a parent with dementia.

BACKGROUND: Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. AIM: Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. MATERIALS & METHODS: Thirty-four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6-step process. RESULTS: In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. DISCUSSION: Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent. CONCLUSIONS: Healthcare providers can utilise these findings to better support adult-child caregivers negotiating care with their siblings.

Roles and Coping Strategies of Sons Caring for a Parent With Dementia.

OBJECTIVE: Little is known about sons' roles in caring for a parent with dementia. To ensure that interventions and practices appropriately match sons' needs, we investigated their experiences. METHOD: A qualitative descriptive approach was used; 20 sons of a parent with dementia participated in semistructured interviews. RESULTS: Participants reported varied paths to becoming a caregiver, primarily undertaking a care management role and managing by using their own occupational experiences and receiving support from other family members, peers, and private and public community services. They experienced negative consequences such as participation restriction and stress and positive consequences such as feelings of satisfaction. Strategies used to cope included boundary setting and practicing self-care. CONCLUSION: This study highlights the need to consider sons' role as care managers for their parent with dementia in community-based settings, as well as their need for education and intervention. Occupational therapy practitioners can use this information to inform their practices and support clients and their families.