Oldest-old (age 80+) spousal care-givers of people with dementia experience unique challenges and concerns that they attribute to age and/or ageing, including difficulties providing care because of physical, cognitive or sensory decline; having fewer friends who can provide practical support; and having less energy for non-care-giving activities (e.g. leisure activities, self-care). Previous research on how older care-givers manage is not specific to oldest-old care-givers and may underrepresent their unique experiences managing age and ageing-related challenges. A limited understanding can compromise our ability to tailor services to ageing care-givers. The purpose of this research was to illuminate how oldest-old spousal care-givers of people with dementia manage ageing-related care-giving challenges and the barriers and facilitators to strategy use. The selective optimisation with compensation theory and the transactional theory of stress and coping informed our conceptualisation of management strategies. We used a narrative gerontology approach, with two or three semi-structured interviews with 11 care-givers aged 80–89 (25 interviews in total). Narrative data were analysed thematically. We identified four main themes that encompassed the strategies shared by care-givers: adjusting goals to lessen care-giving demands and to mitigate stress, using alternative means to reach goals and to mitigate stress, enhancing capacities to care and mitigate stress through engagement in non-care-giving activities, and choosing positive attitudes and perspectives to lessen emotional distress. We identified a myriad of facilitators and barriers to strategy utilisation in each theme. The study provides unique insight into care-givers' management strategies, especially in relation to relocation of self and spouse and participation in non-care-giving activities, as well as insight into age-related facilitators and barriers. This research can ultimately help inform the tailoring of age-sensitive health and social care services to meet the needs of this group of care-givers as they age.

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 investigates the participation of family caregivers when an elderly relative is going to a nursing home. Twenty-two primary caregivers, whose relative, aged 60 years or older, had recently been admitted to a public nursing home, were interviewed. The content analysis reveals that caregivers worry about and do what is needed to ensure the physical, psychological, and social well-being of their elderly relative and take care of her/his belongings. Doing things for her/him gradually gives way to managing things. Caregivers carry out the duty of protecting their family members, stimulating them, and keeping a close watch on the work of the staff of the institution.

Spousal caregivers are the most vulnerable of all caregivers to the stresses associated with the caregiving role, yet they are the least likely of all caregivers to utilize formal support services. This low use of services is poorly understood. To develop insight into this issue, this qualitative study explored how spousal caregivers made sense of the personal experience of living with a memory-impaired partner. The goal was to better understand the interface between this personal experience and the use of formal support services. Information was gathered through the use of unstructured interviews with 14 spouses, most of whom had turned down available formal support services. Analysis of their transcripts revealed the availability of four discourses, or story-lines, for framing the experience. These included two competing story-lines which were used to structure individuals' caring activities and two other competing story-lines which provided the framework for judging one's personal competence within the experience. This paper examines these four discourses and highlights how each influences the meaning associated with the use of formal support services. This analysis makes visible the multiple and sometimes contradictory meanings that service use may have for spouses caring for a memory-impaired partner.

Objective: Brain tumors, a cancer that affects the cortical processes, have a substantial social impact. Typically, malignant glioma is a brain tumor with a poor prognosis; few patients survive more than two years after diagnosis. In the last several years, different groups have documented how this disease affects a patient's quality of life. These findings have resulted in new ways for nurses to improve the care for these patients and their spouses. However, these initiatives have not been studied in a systematic way. This study investigates how patients with malignant glioma and their families respond to a special nurse, a nurse specifically instructed to address the needs of the patient and the patient's family.

Methods: Sixteen patients and their next-of kin were included. At the time of diagnosis, the special nurse offered to serve as a resource to the patient and the patient's family. During the whole course of the disease, the nurse recorded her interactions with the patients and the patients' family. In addition, the spouses were interviewed after the patient's death. Data was analysed qualitatively with focus on tasks and relationships.

Results: Four relationships between the special nurse and the family were detected: 1) a resource for the whole family; 2) a parallel resource within the family; 3) a resource for the next-of kin; and 4) a resource for the patient. Most of the patients and their families found this program beneficial. The nurse provided the patient and family with several functions. In some cases the family and nurse interaction developed into a closer relationship, a relationship based on the nurse's availability and concern for the patient's and family's welfare.

Significance of Results: This close relationship underlines the importance of the nurse's professionalism and a systemic perspective for understanding the nurse's function within the milieu of a cancer patient's family.

Objective: It is known that families of terminally-ill cancer patients show levels of emotional and functional disruption and are called “second order patients,” however, little is actually known about the health problems of family members, especially in terms of cancer.

Methods: This study reviewed the family histories of terminally-ill cancer patients in a palliative care unit and investigated cancer related health problems of the spouses of terminally-ill cancer patients.

Results: We investigated the past medical history of 125 spouses of terminally-ill cancer patients and found that five spouses had a past medical history of cancer. In these five spouses, the duration of illness, present status of treatment and physical condition were reviewed from the database. Of these five spouses, three patients continued to attend an outpatient clinic regularly for checkup and one patient was hospitalized for nephrectomy. Two spouses did not have physical symptoms that made them unable to provide direct care for the terminally-ill spouses, while three could not provide care because of their own physical symptoms derived from cancer.

Significance of results: Our findings indicated that some of the spouses of terminally-ill cancer patients are not only “second order patients” but also “cancer patients.” Our findings also suggest that some spouses of terminally-ill cancer patients might experience distress both as a cancer patient and as a spouse and may need care both as a cancer patient and as a spouse.

Objectives: Caregiver outcomes among those caring for symptomatic advanced cancer patients at VA Medical Centers have not been well reported. The purposes of this study were (1) to identify the caregiver characteristics and their unmet needs; (2) to examine the association between caregiver unmet needs, caregiver burden, and caregiver satisfaction; and (3) to identify the independent predictors of different caregiver outcomes.

Methods: One hundred caregivers completed three caregiver outcomes instruments: Family Inventory of Needs (FIN), Care Strain Index (CSI), and Family Satisfaction with Advanced Cancer Care (FAMCARE). The caregivers' demographics and their function, depression, health status, and social support status as well as the caregivers' perception of the patients' unmet needs (PPUN) were obtained. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. Pearson correlation and stepwise multivariate regression analyses were performed.

Results: The median number of unmet needs was 2 and the median CSI score was 4. Most of unmet needs were related to information needs (needing more information related to home care, finding help with the problems at home, and disease prognosis) and symptom management. The majority of caregivers were satisfied or very satisfied by the care patients received. Spouse caregivers (N = 60, 60%) were significantly older (p = 0.006) with higher unemployment rates (p = 0.001), higher depression scores (p = 0.04), and lower social support scores (p < 0.0001) than nonspouse caregivers (N = 40, 40%). The PPUN predicted caregiver burden and the presence of caregiver unmet needs independently. The presence of caregiver unmet needs was the only independent predictor of caregiver satisfaction. Caregivers with a high PPUN and higher depression score experienced a higher burden.

Significance of the research: The caregiver outcome model is proposed and needs to be further validated in a new cohort of caregivers.

Husbands and wives constitute a large proportion of carers of those older people suffering dementia. Many older people with dementia have had a long history of personal relationships, often having lived with the same partner for most of their lives. Following the life course approach, this study explores the ways in which a couple's marital experiences impinge upon the challenges faced when a spouse develops dementia in late life and is cared for by his or her partner. I start by surveying the relevant literature. The second section outlines a study of nine couples and includes brief case vignettes. In the third section I seek to test out hypotheses extrapolated from the material, with the theme of how perceptions of the caring situation are related to perceptions of the pre-morbid marital relationship, drawing heavily upon the case material. No single discussion is exhaustive, as any of these hypotheses are worthy of intensive study in their own right. I conclude with a summary of the findings and a reflection on how professionals might put these findings into practice.