Dataset Information

Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers' experiences.

ABSTRACT:

Background

More people are dying at home with dementia and Alzheimer's disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services.

Aim

To explore informal caregivers' views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life.

Design

A qualitative interview study. Data were analysed using thematic analysis.

Setting/participants

Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life.

Results

Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy.

Conclusions

End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained.

SUBMITTER: Mogan C

PROVIDER: S-EPMC9174574 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature

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Publications

Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers' experiences.

Mogan Caroline C Harrison Dening Karen K Dowrick Christopher C Lloyd-Williams Mari M

Palliative medicine 20220423 6

<h4>Background</h4>More people are dying at home with dementia and Alzheimer's disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services.<h4>Aim</h4>To explore informal caregivers' views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life.<h4>Design</h4>A qua ...[more]

PMID: 35466787

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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:BackgroundAs 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.MethodsQualitative 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.ResultsWe 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.ConclusionWe 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:BackgroundIt is estimated that more than 57 million people have dementia worldwide, and it is one of the leading causes of care dependency in old age. Relatives and other informal caregivers are the most important support for individuals with dementia, but caring for a loved one with dementia may burden the caregiver. Caregiver burden may have adverse outcomes for both the informal caregiver and the care recipient, including decreased quality of life. Caregiver burden is associated with several factors concerning the informal caregiver, the care recipient, and relational and other contextual factors. The aim of this study was to explore which factors are associated with informal caregivers' subjective burden when caring for individuals living at home with dementia.MethodsThis study was a cross-sectional survey among informal caregivers of home-dwelling individuals with dementia in all five geographical regions of Norway. There were 540 informal caregivers who participated, 415 of whom were included in the regression analyses. Caregivers' subjective burden was assessed with the Relatives' Stress Scale. Covariates included were classified into four levels: individual (twofold: informal caregiver and person with dementia), relational, community, and time. Linear multivariable regression analyses were used to identify associations between subjective burden and included factors.ResultsSeveral covariates were statistically significantly associated with subjective burden at the four levels. These covariates included self-rated health, mental distress, age, coping through resignation and denial, emotional and instrumental support, substance use, and humor at the informal caregiver level; behavioral and psychological symptoms of dementia, dementia severity, and degree of disability at the care recipient level; the extent of care, being the primary caregiver, and previous relationship satisfaction at the relational context level; and informal caregivers spending time with friends, leisure activities, social restriction, and knowledge of available health services at the community context level.ConclusionsInformal caregivers' mental distress and care recipients' neuropsychiatric symptoms were the factors with the strongest association with subjective burden.

Project description:AimsTo explore the experiences of informal caregivers of people with dementia with the hospitalization of their relative concerning patient care, interactions with nurses, caregivers' situation and the acute hospital environment.DesignMixed-methods design.MethodsThe data were collected using an online questionnaire among a panel of caregivers (n = 129), together with a focus group and individual interviews from February to November 2019. The data were triangulated and analysed using a conceptual framework.ResultsAlmost half of the respondents were satisfied with the extent to which nurses considered the patient's dementia. Activities to prevent challenging behaviours and provide person-centred care were rarely seen by the caregivers. Caregivers experienced strain, intensified by a perceived lack of adequate communication and did not feel like partners in care; they also expressed concern about environmental safety. A key suggestion of caregivers was to create a special department for people with dementia, with specialized nurses.ConclusionPositive experiences of caregivers are reported in relation to how nurses take dementia into account, involvement in care and shared decision making. Adverse experiences are described in relation to disease-oriented care, ineffective communication and an unfamiliar environment. Caregivers expressed increased involvement when included in decisions and care when care was performed as described by the triangle of care model. Caregivers reported better care when a person-centred approach was observed. Outcomes can be used in training to help nurses reflect and look for improvements.ImpactThis study confirms that caregivers perceive that when they are more involved in care, this can contribute to improving the care of patients with dementia. The study is relevant for nurses to reflect on their own experiences and become aware of patients' caregivers' perspectives. It also provides insights to improve nurses' training and for organizations to make the care and environment more dementia-friendly.

Dataset Information

Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers' experiences.

Background

Aim

Design

Setting/participants

Results

Conclusions

Publications

Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers' experiences.

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