Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities.

Because of the exacerbation of population ageing, more family members are involved in the informal care-giving for older adults with disabilities to cater to their long-term care needs. As informal care-givers are associated with the mental health of the care recipient, this study, based on the theoretical framework of the Actor–Partner Effect, utilises a mixed method composed of quantitative and qualitative strategies to identify the relationship among gender and type of both care-giver and care recipient, and mental health of the recipient and explain its internal mechanism. In the quantitative research, ordinary least squares (OLS) regression results based on the basis of the Chinese Longitudinal Healthy Longevity Survey (CLHLS) data corroborate the existence of actor and partner effects within the care-giving dyad. The qualitative analysis further explains the socially constructed differences in gender role, trust relationship and perception towards filial piety of adult care-givers playing their role in the emergence of the Actor–Partner Effect. Finally, this study proposes a developed Actor–Partner Effect analysis framework, advocating to destigmatise disability and construct social support networks for the older adults with disabilities who receive informal care to promote their mental health based on the reflection of socially constructed gender difference.

Individuals with Alzheimer's disease and related dementias often require substantial support from other people. Much of the care-giving is from family members who eventually experience physical, emotional and financial stress, depression and fatigue. In Uganda, families are a cornerstone in providing care to individuals with dementia. However, little is known about the psychosocial supports available to the care-givers in their care-giving role. We assessed the psychosocial supports available to care-givers of individuals with Alzheimer's disease and related dementias in southwestern Uganda. We conducted 34 in-depth interviews at three referral hospitals at which care-givers identified by the treating clinicians were approached for informed consent. The interviews were conducted until thematic saturation was reached, and the interviews were translated and transcribed. Thematic content analysis was used to analyse the data. Care-giver supports were structured into two major themes: medical supports utilised and supports beyond the medical care system. Medical supports highlighted information provided by medical professionals. Supports beyond the medical care system included emotional and instrumental supports provided by religious leaders, the local communities and family members. Care-givers for individuals with dementia in southwestern Uganda receive educational support from medical practitioners, and unstructured emotional and instrumental supports from the family and community.

Whilst loneliness and social isolation amongst older care-givers are becoming increasingly recognised, little is known about how these concepts impact on specific sub-groups of care-givers, such as older males. In the current study, we aimed to gain a better understanding of the experiences of loneliness and social isolation amongst older spousal male care-givers. Semi-structured interviews were undertaken with 24 participants, caring for a spouse/partner with a long-term chronic condition. After thematic analysis of the data, three themes were identified: dwindling social interactions, loneliness in the spousal relationship, and living with loneliness and social isolation. Study findings suggest that opportunities for social interactions gradually ‘dwindled’ due to a reluctance by older male care-givers to leave their spouse/partner at home alone, to accept offers of help or respite, or to attend social events without their spouse/partner. Consequently, social isolation increased. Feelings of physical and emotional loneliness were evident, and the loss of spousal companionship (such as loss of conversation and shared interests) increased loneliness. Individualised coping strategies were adopted including focusing on moments of positivity, talking to others and using prescribed medication. Findings provide insight into the experience of loneliness and social isolation for many older male spousal care-givers. This may facilitate a better understanding of older male care-givers’ support needs in addressing loneliness and social isolation, and should help to inform the development of targeted support services for this population.

Language can shape and reinforce attitudes and stereotypes about living with dementia. This can happen through use of metaphors. However, common metaphors may not capture the complexity of experience of dementia from the perspective of the individual person or a family carer. This paper presents an alternative metaphor – that of a theatre production – based on the strategies used by carers to support people with dementia to live well in the community. We conducted face-to-face semi-structured interviews with 12 family members caring for someone with dementia in the community in Queensland, Australia. Our aim was to explore the strategies these carers used to provide support. Interview recordings were fully transcribed and thematically analysed. We identified positive care-giving strategies that described multiple roles that carers fulfilled as they felt increasingly responsible for day-to-day decision making. Family carers explained how they supported the person with dementia to remain a central character in their life and continued to support the person to be themselves. To achieve this, family carers embodied roles that we identified as similar to roles in a theatre production: director, stage manager, supporting cast, scriptwriter, and costume designer and wardrobe manager. Our metaphor of a theatre production offers a fresh perspective to explore the experience of informal care-giving in the context of dementia.

This article is based on a study that used a validated care-giver assessment instrument known as ‘The C.A.R.E. (Caregivers’ Aspirations, Realities, and Expectations) Tool’ to understand its usefulness in working with older adults caring for a spouse with cognitive impairment. It draws on data collected as part of a larger, quasi-experimental pre- and post-test study examining the impact of a care-giver assessment on older spousal care-givers of a partner with cognitive impairment. One hundred community-living individuals (average age of 74) participated in the study. Participants met with a third-year nursing student who administered The C.A.R.E. Tool. Within three to seven days following this, a research team member conducted a semi-structured interview by telephone. This interview provided participants with the opportunity to comment on their experience and the usefulness of The C.A.R.E. Tool. Transcriptions of the interviews were analysed using a thematic analysis. Results indicate that the assessment experience was evaluated positively by most participants. Two broad themes emerged: assessment encourages care-givers to take stock of their situation, and it provides a relationship with a caring professional. In particular, the assessment experience gave these care-givers to have the opportunity to reflect, while expressing emotions and developing awareness, and provided them with an appreciated relationship with a caring professional who helped to validate and normalise their situation. For care-givers, the results suggest that assessment may serve as a catalyst for taking action in their care-giving situation or turning to services for help. For practitioners, assessment may increase awareness of the experience of spousal care-givers, potentially leading to interventions to support them. This study found that the attitudes and knowledge of practitioners play a role in care-givers’ experience of the assessment as positive. However, the goal of assessment must be clarified, as outcomes of other tools will differ depending on the aims.

This study explored aged care support workers’ perceptions of how their health was influenced by their job, highlighting similarities and differences of those working in community-based and institution-based care. Support workers working in two institution-based and three community-based aged care organisations were invited to participate. Semi-structured interviews were undertaken with ten participants. Open-ended questions probed participants’ perceptions of their health as it related to their work. Data were analysed with the General Inductive Approach. Four central themes were identified, many of which related to mental, as opposed to physical health. ‘Love of the job’ described various sources of satisfaction for participants. These factors commonly overrode the negative aspects. ‘Stress’ encompassed the negative influences on all aspects of health. ‘Support’ described the positive influences on health, which supported participants in their job. ‘Physicality’ described the physical nature of the job and the positive and negative impact this had on participants’ health. Support workers perform numerous tasks, which often impact upon their health. Aspects of the job that may impact the health of the worker are improved communication and support from management, as well as recognition for support workers’ contribution to society. These could be targeted to enhance support worker health. Additional training and reduced time pressure may also represent aspects for improvement, to optimise support workers’ physical health.

Background: Partners of people with Parkinson's disease (PD) have first-hand knowledge relevant to the management of the person with Parkinson's (PwP). If captured, this knowledge may improve effective care for the PwP. However, there is a lack of research focusing primarily on partners’ experiences of engagement with health professionals working in PD (HPPs).

Methods: Interpretative Phenomenological Analysis (IPA) was used to investigate the meaning of partners’ experiences of engagement with HPPs. Semi-structured interviews with 15 partners of PwP provided primary data. Each interview was digitally recorded, transcribed verbatim and analysed for emerging themes.

Results: Three themes emerged: (i) partners’ lack of entitlement for their own needs to be met; (ii) submersion of self in the partnership and (iii) health professionals as agents of support. Additionally, sub-themes were identified, such as barriers to feeling entitled, setting up a premise for entitlement, and lost identity. Together, these themes highlight the current lack of focus on the partners of PwP. A process model was developed to describe partners’ cyclic progression through the various stages of their experience, and in the process, identifying initiatives for intervention.

Conclusion: Given a lack of focus on the needs of partners of PwP, these preliminary insights could inform the delivery of improved services that support partners. This will ultimately benefit the PwP.

The purpose of this study is to develop and extend our understanding of dementia care-giving by introducing a typology of informal care-giving across four different diseases. Care-giving factors were examined with respect to specific dementia presentation in mild cognitive impairment, Alzheimer's disease, dementia with Lewy bodies and Parkinson's disease-associated dementia. Informal care-giving literature in the four diseases was systematically searched to identify specific disease symptoms and resultant care-giving strains and outcomes. Key concepts were extracted and grouped thematically. The first classification, ‘role-shift’, reflects care-giving where cognitive deterioration results in changing roles, uncertainty and relational deprivation among married partners. The second classification, ‘consumed by care-giving’, refers to those caring for persons with dementia-motor decline that greatly increases worry and isolation. Finally, in the ‘service use’ classification, formal support is needed to help care-givers cope with daily responsibilities and behaviour changes. In each case, the dementia presentation uniquely impacts care-giver strains. A major conclusion is that the same support to all care-givers under the umbrella term ‘dementia’ is unwarranted; the development of targeted support is required.