Category: Dementia – Supporting Carers

The relationship between people with dementia and their carers is complex and has a significant impact on the dementia experience. The aim of this current study was to determine (1) which factors are associated with the quality of the patient-carer relationship and (2) whether these differ between the two perspectives. . People with dementia generally rated the quality of relationship higher, irrespective of level of dementia, depression or anxiety. This study is novel in that it provides a valuable insight into the impact of mental health on relationship quality for both members of the dyad. The findings emphasise the importance of providing interventions which target mood for both parties, and behavioural problems for people with dementia.

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Many health-care professionals also take on a caregiver role at home, usually by caring for a dying relative. Very little is known about the perceptions, experiences and needs of this specific group of carers.

Healthcare professionals’ needs as caregivers are not assessed and addressed holistically, creating room for improvement. Participants felt emotionally pressured by their families to get answers and find solutions during caregiving. Despite it being a complex and painful process, participants still gave examples of rewards experienced during caregiving.

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The associated burden of caring with a spouse with dementia has been linked to a number of mental health problems, such as depression. The existing literature has explored differences in caregiver depression from the qualities of both the caregiver and the patient, but rarely on the qualities of the relationship. The present study examined whether differences in the emotional quality of interactions between caregivers and patients were associated with differences in depressive symptoms of caregivers.

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The course of psychological distress in informal caregivers of patients with dementia has been investigated in longitudinal studies with conflicting outcomes. We investigated the course and determinants of psychological distress in informal caregivers of patients with dementia in primary care.
GPs should focus on NPS (neuropsychiatric symptoms) in patients with dementia and on caregivers’ psychological distress and be aware of their risk for depression and mental problems, specifically to those who are spouse, female or between 50 and 70 years of age.

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This study examines the psychometric properties of different short versions of the Zarit Burden Interview (ZBI), and aims to find an efficient and valid short version for clinical use among dementia caregivers.  A total of 270 Taiwanese dementia caregivers filled out the full form of the ZBI, which contains 22 items. They found the 12-item ZBI to be a promising measure for healthcare providers to assess the burden of dementia caregivers quickly and efficiently.

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Dementia family caregiving has been the focus of research for decades. Much has been learned about the negative impact of caregiving as well as characteristics that may be protective. This paper explores themes in caregiving pertinent to clinicians and researchers working with dementia family caregivers: the psychological, subjective, and physical outcomes of caregiving, ways in which dementia alters relationships between the patient and caregiver, and strategies for improving outcomes for caregivers. Suggestions for next steps in research and clinical care are made.

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Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group. The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly, and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.

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This qualitative study explored spousal caregiver perspectives on the experience and impact of a person-centered social program for partners with dementia. Interviews with 5 caregivers and the spouses with dementia were conducted 7 to 8 months after the program ended to explore the sustained impact of the program. Interpretative phenomenological analysis was used to support in-depth exploration of interviews. Three themes emerged including benefits of the program for caregivers, initial expectations and later perspectives of caregivers about the program, and conflicting values and perspectives between caregivers and the spouses. These findings suggest participation in a person-centered social program by people with dementia benefits their caregivers, by meeting the caregivers’ desire for their spouses to increase social participation and engagement in meaningful activities. Participation in the program provided a sustained benefit to one couple in particular, by encouraging the caregiver to resume arranging activities the couple once enjoyed but now had difficulty pursuing.

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To characterise the differences in caregiver distress between carers of people diagnosed with dementia with Lewy bodies (DLB) and people with Alzheimer’s disease (AD), with a view to differentiating and improving support for caregivers. This study is a part of two larger Norwegian studies.  Findings:  Caregiver distress differed (RSS total, p?=?0.005) between people caring for someone with AD (15.0) and those caring for someone with DLB (19.9). These findings have direct implications for the needs and resources that could be available for these individuals and indicate the need for further research into caregiver burden in carers to people with DLB.

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Catch a Glimpse of Me is an ongoing project that uses video to help staff deliver more person-centered care for people with dementia living in long-term care. Focus groups consisting of residents, family and staff members were conducted to develop a template for the development of the videos. The five themes they identified as being important to include are: family; interests and hobbies; memories and moments; life space and getting personal. The article describes the process of developing the videos and discusses the ongoing potential of the Catch a Glimpse of Me project.

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