Nathan L. Linsk

HIV and the Elderly

A substantial and increasing number of people have developed HIV infections in their later years, most associated with male-to-male sexual contact or blood transfusions, although transmission also occurs through substance users and unsafe heterosexual activity. Human service practitioners need to become sensitive to the needs of elderly people and their families who are affected by HIV/AIDS. Prevention may be incorporated as part of initial engagement and assessment of elderly persons, and service packages may be developed for older persons who are infected or provide care for HIV-infected persons. Issues of confidentiality, social support, family care, and nondiscrimination are critical concerns in serving this population.

Community Care Policies and Gender Justice

The current approach in the United States to the provision of community care to the elderly interacts with the feminized structure of family care-giving to foster inequities for women, who provide the bulk of informal, unpaid care. The central concern of present policies with limiting eligibility and rationing benefits results in policies that reduce the choices of these carers, many of whom are already substantially disadvantaged by their economic position in society. What is necessary for gender justice is development of policies that address the needs and rights of carers and elders by providing necessary supports to families, including, when appropriate, adequate compensation to carers. We argue for an approach that takes into account the relationship of the adequacy of government support and the capacity of individuals to freely choose the caregiving role.

Families, Alzheimer's Disease, and Nursing Homes

The Alzheimers Disease Family Care Center program was established within an intermediate care teaching nursing home as a demonstration program to investigate ways to involve families in care of their relatives. In total, 45 family members participated in a program including an orientation session; a preliminary family involvement interview; contracts with family members, in which they chose specific tasks to engage in during visits; a five-session course on Alzheimers disease and how families may be partners in care within the facility; and an ongoing family support group. Evaluation data sources include a baseline and 9-month follow-up questionnaire completed by families, preliminary and follow-up family interviews conducted by project codirectors, records of family visits, and family choices on contracts. Findings from the 23 family members who contracted for tasks during their visits and from the follow-up questionnaire completed by 25 family members showed that most sought social and emotional interactions with relatives, some maintained direct personal care activities, and only a few identified interest in extensive involvement with staff and facility. At follow-up, family members involved in the program reported they continued to feel close to their relatives. Many felt that their relatives were generally stable or improved with regard to cognitive function, but over a third noted difficulties in communicating. Participating family members reported that the program of staff supports helped them to feel more integral to the unit. They expressed a need for more education and support for their involvement in the nursing home setting. Project findings confirm previous studies recommending that programming at nursing homes needs to include specific institutional and staff supports to maintain and enhance family contributions to the long-term nursing home care of their relatives.

Home-based behavioral family treatment of the impaired elderly

This research was designed to examine the utility of training caregivers to effectively manage behavior problems of impaired elderly persons. Of primary interest was whether caregivers could be trained to use procedures, based on operant theory, to manage behavior problems of sufficient severity to threaten continued home care. Both the caregivers and the impaired individuals were targets of study: behavior change of the impaired individual was monitored and caregivers perceptions of burden and competence were measured pre- and postintervention. Data were analyzed on a case-by-case basis using single-subject designs. Improvement was observed in 76% of the targeted behaviors. Caregivers acknowledged improvements in their interactions with their relatives and reported that they were satisfied with their abilities to learn to change their relatives behavior.

Service utilization, service barriers, and gender among HIV-positive consumers in primary care.

Title I of the Ryan White CARE Act provides emergency assistance to localities disproportionately affected by HIV and AIDS. In 1999, the Title I Chicago Area HIV Services Planning Council expressed concern regarding the lack of a client-level database. In response to the Planning Council, evaluators conducted a longitudinal interview study of HIV-positive individuals who were receiving primary care at Title I funded clinics within Chicago and the surrounding collar counties. Analysis of baseline data explored gender differences in transmission risk, service utilization, and service barriers among study respondents. Among the 161 respondents, men were more likely than women to use alcohol and other drugs during sexual activity. Men were also more likely to use HIV medication. Women, however, were more likely to have someone to coordinate their HIV care. Close to half (47.2%) of these primary case patients reported at least one unmet service need, most frequently dental care, housing support and transportation. These findings suggest a continued need for HIV-related community-based services as well as increased attention to the unique experiences of both men and women within the HIV service system.

HIV/AIDS prevention and care services and services for the aging: bridging the gap between service systems to assist older people.

The service systems for patients with or at risk for HIV infection/AIDS and for the aging must work together to address the needs of older adults who engage in HIV risk behaviors or who are HIV infected. Health and human service organizations miss opportunities for service integration in prevention, care, and supportive services. The authors illustrate critical issues and offer strategies to address these missed opportunities.

Putting a face on HIV infection/AIDS in older adults: A psychosocial context

Summary: Older HIV‐1‐seropositive individuals largely have not been investigated with respect to their psychosocial characteristics. In this article, the authors review research reported to date regarding the psychosocial context of this growing subgroup of HIV‐1‐infected individuals. Specifically, the authors consider the characteristics of mood state, life stressor burden, social support network, and coping strategies that individuals older than 50 years are more likely to adopt in adjusting to HIV‐1 infection. The authors also separately consider issues of caregiving burden. Data supporting a theoretically based stressor‐support‐coping model are presented and related to targeting psychotherapeutic interventions for this age group.

Older Caregivers for Family Members With HIV or AIDS: Reasons for Caring

This qualitative study explored the experiences of 19 older women from minority communities who provided care to their children or adult relatives infected with human immunodeficiency virus (HIV). These caregivers felt that providing this care contributes significantly to their sense of identity. Most provided care because of their sense of personal commitment to caring for the individual in need or because they felt they were the best or only available source of care. The findings reveal a previously hidden group of aging family members who provide extensive support for people with HIV and AIDS while paying minimal attention to their own needs.

“No Matter What I Do They Still Want Their Family”: Stressors for African American Grandparents and Other Relatives

Grandparents and other relatives increasingly assume the role of primary caregiver to minor children. This study interviewed family members caring for children whose parents were not available due to parental incarceration, other involvement in the criminal justice system, and substance abuse-related issues. Interviews with 25 African American women examined the impact of caregiving including stress and depression. Stress included caregiver issues related to finances, time allocation, care responsibilities, and concerns about the absent parent, as well as issues specific to the children related to school concerns, child behavior, and emotional problems. These stresses were examined along with caregiver depression scores using the Center for Epidemiological Studies Depression Scale, which indicated more depression related to caregiver illnesses, older caregivers, and care for older and a larger number of children. This study suggests that caring for these children is both challenging and stressful, and caregivers are at risk for depression and other mental health concerns. Health and service providers should carefully assess the needs of caregivers when determining the needs of families where children are under care of nonparental relatives. Family-based services are needed that include caregiver supports as well as support for children.

Evaluation of aids education and training center clinical training

&NA; Health professionals need accurate basic information about HIV disease as well as clinical research updates; earlier research suggests that information alone seldom changes practice behavior. This paper explores the consequences of a comprehensive clinical training package offered by an AIDS Education and Training Center, including an exploration of provider behavior change as a result of training. Follow‐up telephone interviews were conducted with 66 program participants an average of 9 months after training. Respondents reported opinions about the educational program, how practice patterns had changed, and whether they have trained others following their participation. Participants reported high satisfaction with training and indicated that they had increased the number of HIV‐positive patients in their practices. Training activities valued most highly included clinical emphasis and patient simulation. Respondents also reported doing considerable training of other providers after their training. The study findings suggest that HIV educational programs targeted to health providers should combine specific clinical information with skill development opportunities that emphasize patient contact. This combination training approach is especially important as new and complex drug therapies emerge that require joint decision making between persons living with HIV and health service providers.