Family dynamics in dementia care: A phenomenological exploration of the experiences of family caregivers of relatives with dementia

Smith, Lourett; Morton, David; Rooyen, Dalena van

doi:10.1111/jpm.12822

Cited by 19 publications

(19 citation statements)

References 48 publications

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“…It is possible that family caregiver's sense of connection is influenced specifically by being related to the PWD as spouse, sibling, adult child or other relative. Differences in attitudes, individual responsibility, and conflict around caregiving may occur according to the relationship the caregiver holds 37 . These differences may influence the experience of connection the caregiver has with the PWD.…”

Section: Discussionmentioning

confidence: 99%

“…Differences in attitudes, individual responsibility, and conflict around caregiving may occur according to the relationship the caregiver holds. 37 These differences may influence the experience of connection the caregiver has with the PWD. Additionally, not all unpaid caregivers are family members and not all PWD have family.…”

Section: Exploring the Benefits And Challenges Of Connection For Both...mentioning

confidence: 99%

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“Out of the clear blue sky she tells me she loves me”: Connection experiences between caregivers and people with dementia

Sideman

Merrilees

Dulaney

et al. 2023

J American Geriatrics Society

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Background Dementia can impede the relationship and connection between the person with dementia (PWD) and their caregiver. Yet, caregiving in dementia also offers opportunities for connection, which has implications for caregiver and PWD well‐being. In this qualitative study, we describe and characterize ways caregivers felt connected to the person with dementia they care for. Methods We conducted a telephone‐based survey with caregivers of people with dementia. For this paper, we analyzed responses to an open‐ended question focused on when caregivers feel most connected to the person they are caring for. Responses were analyzed and coded and themes were identified through an iterative process involving a multidisciplinary team of researchers and clinicians. Results 437 caregivers participated in this study. We identified two domains of connection: activity‐based and emotion‐based connections. Within activity‐based connections, the following themes emerged: everyday activities; reminiscing; activities of caregiving; novel experiences; and time with family and friends. Within emotional connections, the following themes emerged: expressions of love, appreciation, and gratitude; physical affection; sharing an emotion or emotional experience; and times when the PWD seems like “themself” again. Conclusions Findings provide insights into ways caregivers experience a sense of connection with the person they care for. There is a call to shift away from focusing on reducing stress and toward optimizing positive experiences as a way to better support caregivers' health and well‐being. Interventions that leverage these insights to foster caregiver – PWD connection could lead to better health and well‐being for both members of the dyad. The amplification of a positive experience may be particularly important for caregivers who are struggling with limited support or respite. Clinicians may be interested in using a question about connection as a way to more fully understand a caregiver's current experience.

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Section: Discussionmentioning

confidence: 99%

Section: Exploring the Benefits And Challenges Of Connection For Both...mentioning

confidence: 99%

“Out of the clear blue sky she tells me she loves me”: Connection experiences between caregivers and people with dementia

Sideman

Merrilees

Dulaney

et al. 2023

J American Geriatrics Society

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“…Caregiving places stressors that affect family dynamics (Smith et al, 2022). Many caregivers do not understand disease progression and do not recognize that patients with dementia experience behav-Having a diagnosis of HF increases the risk of dementia by 60%.…”

Section: Strategies To Deal With Challengesmentioning

confidence: 99%

You're Not Who You Used to Be

Young

Smith

Shafique

et al. 2023

Home Healthcare Now

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Heart failure and vascular dementia have similar underlying pathologies, so it is not uncommon for one condition to exist in the presence of the other. In-home management of each condition is challenging for patients and their family caregivers, but when both conditions are present, those challenges are amplified. The purpose of this case report is to describe one family's experience managing heart failure and vascular dementia at home. A mixed method of semistructured interviews and short surveys was used to examine the health status and well-being of the patient and family caregiver. Data were derived from individual interviews and standardized measures. Survey results revealed the patient had worsening dementia, poor heart failure-related quality of life, poor spiritual well-being, depression, and diminished self-care. The caregiver reported poor physical and mental health. Interview data revealed frustration dealing with worsening symptoms, inadequate information about disease progression, and fear of an unknown future. Additionally, the patient suggested strategies to deal with challenges. Families managing heart failure and vascular dementia need easy-to-understand education from healthcare providers, on-going assessments, and early referrals to support services including those provided by social workers and chaplains.

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“…17 These decisions may be in conflict with the decisions of the family member who is nearby and who feels he/she is more informed in making decisions because he/she experiences the day-to-day needs of the NH resident. [17][18][19] In contrast, having other family members involved in decision making can be a source of support for proxies. 7,8 Proxies may turn to other family members for input on decisions and to mediate the burden of making difficult decisions.…”

Section: Introductionmentioning

confidence: 99%

“…This can be the case when a family member is not present and they may want to make decisions based on guilt for not being close by, rather than the goals of care 17 . These decisions may be in conflict with the decisions of the family member who is nearby and who feels he/she is more informed in making decisions because he/she experiences the day-to-day needs of the NH resident 17-19 . In contrast, having other family members involved in decision making can be a source of support for proxies 7,8 .…”

Section: Introductionmentioning

confidence: 99%

Staff and Proxy Views of Multiple Family Member Involvement in Decision Making for Nursing Home Residents With Advanced Dementia

Roach

Rogers

Mitchell

et al. 2023

J Hosp Palliat Nurs

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Decision making for nursing home (NH) residents with Alzheimer disease and related dementias often involves input from multiple family members and NH staff to address goals of care at the end of life. Using data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life research study, a secondary analysis of qualitative data was conducted involving interviews of 144 NH staff and 44 proxies in 14 NHs to examine the perspectives of NH staff and proxies for NH residents with Alzheimer disease and related dementias on the involvement of multiple family members in decision making about end-of-life care decisions. Interviews took place between 2018 and 2021. Nursing home staff and proxies had differing perspectives of the involvement of multiple family members in decision making, with NH staff primarily viewing families as a source of conflict, whereas proxies viewed families as a source of support. Nursing home staff also had differing opinions of their role with families; some attempted to ameliorate conflict, and some did not get involved. Some NH staff felt that Black families had more conflict than White families, indicating unacceptable bias and stereotyping of Black families by NH staff. These findings suggest training and education is needed for NH staff to facilitate better communication with families and to support proxies in end-of-life decision making to address goals of care for NH residents with Alzheimer disease and related dementias.

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Family dynamics in dementia care: A phenomenological exploration of the experiences of family caregivers of relatives with dementia

Cited by 19 publications

References 48 publications

“Out of the clear blue sky she tells me she loves me”: Connection experiences between caregivers and people with dementia

“Out of the clear blue sky she tells me she loves me”: Connection experiences between caregivers and people with dementia

You're Not Who You Used to Be

Staff and Proxy Views of Multiple Family Member Involvement in Decision Making for Nursing Home Residents With Advanced Dementia

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