Needs and experiences of caregivers for family members dying with Parkinson disease

The caregiver burdens and unmet needs of patients with Parkinson disease (PD) in the final months of life are poorly documented. We surveyed 47 family caregivers of PD patients a median of 18 months after death. We measured caregiver preparedness for their role, assistance provided the patient, and types and settings of care received by the patient. Typical caregivers were older female spouses. Though 66% of patients resided in a care facility during the last month, over half received care from hospice, 36% from a home health agency, and 43% by privately paid aide in the months before death. Caregivers rated tasks involving physical effort as most difficult. While most caregivers felt prepared for their role, one-third or more were unprepared for the stress and physical strain encountered. These data suggest that increasing education and assistance with physical tasks may address unmet needs of PD caregivers.     

Australian caregivers of family members with dementia

This study of Australian caregivers revealed that sufferers of dementia were men and women who were cared for mainly by their spouses. A small group of caregivers had little or no personal physical and emotional support from others. Changes in health status related to the caregiving role was reported by 83% of the caregivers. There is a clear need to provide physical and emotional support for caregivers generally and for those with little or no support in particular.     

Caring for family members with Alzheimer's disease: perspectives from Chinese American caregivers

The purpose of this study was to examine the experiences of Chinese American caregivers who provide care for family members with Alzheimer's disease (AD). Individual interviews were conducted with four family caregivers. Results revealed ethnocultural and structural barriers that Chinese family caregivers experienced, including stigmatization of AD in the Chinese community, a lack of knowledge about AD, a lack of culturally and linguistically appropriate AD services, nega tive interactions with health-care providers, and difficulty with English. This study vides cultural knowledge and insights nurses who care for AD clients and their fam ilies. Overcoming barriers and working with Chinese American families and their community are needed to improve access and dementia services for Chinese American patients and their families.     

Responses of family caregivers and family members with Alzheimer's disease to an activity kit: an ethnographic study

This qualitative evaluation research focused on individuals with Alzheimer's disease cared for at home by a family caregiver. It aimed to assess the responses of family caregivers and family members to an activity kit containing 20 therapeutic activities (The BAG or 'Be Active with Games' kit). In-depth interviews with and observations of 21 caregiver/member dyads were analysed according to Spradley's ethnographic method. Responses to The BAG were contingent upon the family member's symptoms, prior experience, and time of day. For some caregivers The BAG was useful in filling time, inspiring additional activities, facilitating connections with the family member, and connecting family members with their past; for others it was an additional burden in an already frenetic life. The BAG engaged some family members with AD while it 'insulted' others. The value of activities for individuals with AD requires more theoretical and methodological exploration.     

Voices of Mexican American caregivers for family members with cancer: on becoming stronger.

This grounded theory study report describes the experience of 34 Mexican American (MA) female caregivers who provided care to a family member with cancer. Caregivers identified a process of "Becoming Stronger" as a result of their caregiver role. The emerging theoretical model of female MA cancer caregiving offers evidence to change current cancer care approaches from patient-focused to family-focused care for this ethnic group. Findings suggest that changes most responsive to cultural values and likely to provide accessible and quality cancer care for MA families are those that involve active partnering with MA caregivers to prioritize the patient's cancer care.     

Developing a living with hope program for caregivers of family members with advanced cancer

A theory-based intervention, the Living with Hope Program (LWHP), was designed to foster hope in caregivers of family members with advanced cancer. The LWHP was developed from qualitative data and using Harding and Higginson's recommendations for family caregiver interventions as a guide. The LHWP is: (a) focused specifically on the caregivers themselves, (b) theory based, (c) feasible, (d) acceptable, and (e) pilot tested. The program consists of a hope video and a hope activity titled Stories of the Present. A mixed-method, concurrent triangulation, pre- and post-test design was used to pilot test the LWHP The results of the pilot test suggest the LWHP is easy to use, flexible, and feasible, and shows promise in increasing hope and quality of life scores in family caregivers.     

Family medical leave. An employee benefit for working caregivers of elderly family members

Future trends include a decrease in the number of adult children, an increase in the number of individuals over age 65, single parent families, working women, and individuals with no health care insurance. As more women with multiple roles and responsibilities enter and continue as part of the work force, employers recognize the need for support of family issues. Currently many employers lack initiative to make these needed changes. The occupational health nurses' role in relation to future policy for working caregivers includes assessment of how employment and caregiving impact work performance, job satisfaction, and health; and participation in defining public policy issues.     

老年性痴呆病人照顾者的悲伤研究进展

介绍了悲伤的定义、产生过程以及影响,重点阐述了阿尔茨海默症家属照顾者悲伤的评定、影响因素以及干预措施。     

Supporting family caregivers: communicating with family caregivers

Nurses can foster partnerships with patients and families during acute care hospitalizations.     

The emotions and coping strategies of caregivers of family members with a terminal cancer

This study documents the emotional experiences and coping strategies of a group of caregivers as they move from the diagnosis of a close family member with terminal cancer through the stages of caring and post bereavement. Supportive evidence, matching that of previous literature, was gathered regarding the impact of such care, but additional findings counter the notion of "burden" by revealing that strong positive emotions were experienced by these caregivers regarding the opportunity given to them to express their love through care. By contrast and post bereavement, however, intense grief was reported. There appeared to be a complete lack of emotional support throughout from health professionals, particularly in the bereavement phase when need is very apparent.     

A process of decision making by caregivers of family members with heart failure

Heart failure (HF) is a major cardiovascular problem and the number of people living with HF continues to climb. Throughout the illness continuum, patients and their family caregivers are involved in decision making. As the illness worsens and patients can no longer make decisions, decision making becomes the responsibility of their caregivers who may have little preparation for the role. The purpose of this grounded theory study was to examine how caregivers of family members with HF make decisions. A nonlinear decision-making process consisting of several actions was identified, which included actualizing; seeking input, information, or support; reflecting; choosing; evaluating; and validating the decision.     

Social problem-solving partnerships with family caregivers.

The goal of this pilot study was to compare the effectiveness of home and telephone social problem-solving partnerships on primary family caregiver outcomes and to determine whether certain caregiver and stroke survivor characteristics influenced these outcomes. Thirty primary family caregivers were assigned to either a home visit, telephone contact, or control group. A registered nurse trained caregivers in the intervention groups in a series of seven telephone calls or home visits during a 12-week period to use social problem-solving skills in managing caregiving problems. Primary family caregiver outcomes were compared before the intervention, during the intervention (at 2 and 5 weeks after discharge), and after the intervention (at 13 weeks after discharge). Compared to the home and control groups, the telephone group had a significant reduction in depression, more positive problem-solving skills, and greater caregiver preparedness during the intervention, and improved, but nonsignificant depression, problem-solving, and caregiver preparedness scores postintervention. Race, age, and education were significant for selected outcomes.     

The impact of Alzheimer's disease on family caregivers

An understanding of the concerns and fears of caregivers of Alzheimer patients can help the health care professional provide home care management more effectively.     

Improving quality of life for persons with Alzheimer's disease and their family caregivers: brief occupational therapy intervention.

OBJECTIVE: This study examined the extent to which adherence to occupational therapy recommendations would increase the quality of life of persons with Alzheimer's disease living in the community and decrease the burden felt by family members caring for them. METHOD: Using a pretest-posttest control group design, the Assessment of Instrumental Function (AIF) was administered to two groups of persons with Alzheimer's disease in their own homes (n= 40). Caregivers completed measures of their feelings of burden and the quality of life, including level of function of the persons with Alzheimer's disease. RESULTS: A significant (MANCOVA) main effect was obtained for caregiver burden and three components of quality of life, positive affect, activity frequency and self-care status, by the treatment group, F(4, 31) = 7.34, p < .001. CONCLUSIONS: Individualized occupational therapy intervention based on the person-environment fit model appears effective for both caregivers and clients. This is especially important in light of a recent directive for more favorable reimbursement for occupational therapy services for persons with dementia.