Facilitating Future Planning for Ageing Adults with Intellectual Disabilities Using a Planning Tool that Incorporates Quality of Life Domains

Abstract

When ageing families of an adult with a lifelong disability embark on a process of planning for the future, they generally think in terms of making hard and fast decisions about: (1) where the person with the disability is going to live when “the time comes”; and (2) who will take on their direct care. However, there is common trepidation among many families when it comes to launching their son or daughter with a lifelong disability. Generally, many families ignore, neglect, or simply do not engage in making any formal plans at all. When ageing families do make plans, they often focus only a place to live. This can mean that other significant aspects of a person's life (i.e., quality of life factors) are negated or neglected. Reviewing population demographics for both the Republic of Ireland and Northern Ireland, it was ascertained that a sizable number of parents will be aging in the near future and that some formalized assistance for future planning was needed. To this end, a planning instrument, What the Future Holds, was developed in order to help families and other carers with planning for the future and involving a variety of quality of life domains, including health, financial, vocational, social, civil, and residential well-being.     

Family Caregivers of the Elderly

Two groups of primary family caregivers were interviewed; one whose older relatives received assistance from an inhome chore services program, the other whose relatives had been terminated from service due to budget reductions. Both groups of caregivers were found to be actively involved in providing care to their older relatives. The assistance that caregivers provided was similar whether or not their relative received chore services. No significant differences were found in the type of tasks they provided nor in the amount or length of time they have provided care. The data suggest that there may be limits to the assistance that these caregivers can provide and that care of the elderly beyond such limitations needs to be supplied by other sources. Caregiving may be influenced both by the particular circumstances of the caregiver and the individual needs of the older relative. These findings support the notion that there is a need for shared responsibility between the family and government, based on an understanding of the tasks that family caregivers are best able to provide.     

Quality of Relationships Between Care Recipients and Their Primary Caregivers and Its Effect on Caregivers' Burden and Satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.     

Unexpected Caregiving in Later Life: Illuminating the Narratives of Resilience of Grandmothers and Relative Caregivers through Photovoice Methodology

ABSTRACT

This research study implements photovoice methodology with unexpected caregivers to illuminate the lived experiences of female grandparents and relative caregivers who are raising young children in the later stages of their life. As they enter older adulthood, grandmothers are increasingly finding themselves taking care of their children’s children for various reasons, including, but not limited to, their adult child’s incarceration, mental health issues, drug and alcohol addiction, or child abuse or neglect. Informed by various feminist theoretical lenses, we use photovoice methodology to highlight the narratives of resilience and explore the ways in which grandmothers re-conceptualize their roles and identity as an unexpected caregiver and the sources of strength and resilience that inform the ways in which they navigate the various circumstances in their lives.     

Changes in Life Satisfaction Among Participants of Adult Day Care and Their Informal Caregivers

This paper examines changes in life satisfaction among participants of Adult Day Care (ADC) in Manitoba, Canada, and their informal caregivers (where applicable). ADC participants (N = 112) and their informal caregivers (N = 34) were interviewed at two points in time. Data analyses reveal that, during attendance at the program, the life satisfaction of both the participant and the informal caregiver tend to improve. Attempts to predict which participants are most likely to improve, remain stable, or deteriorate in life satisfaction were largely unsuccessful. A smaller group of participants in Winnipeg programs were matched on age, sex, functional disability and illness with two control groups. Analyses reveal improvements in life satisfaction among ADC participants appear to be program effects.     

Supportive Group Interventions with Caregivers of Frail Older Adults

The use of supportive group interventions with caregivers of frail older adults is discussed in this article. Four categories of group interventions are described: (1) mutual support groups, (2) psychoeducational groups, (3) social, recreational and educational groups, and (4) service and advocacy groups. Research evidence on the efficacy of group interventions with this population is also considered. Recommendations are made on when to refer caregivers to support groups and on what type of support group is most appropriate. Consideration by practitioners and program planners of a broader range of types of supportive groups is also encouraged.     

Consolidated Measures of Activity among Older Adults: Results of a Three Data Set Comparison

This study explores the potential to consolidate a broad range of activity items to create more manageable measures that could be used in statistical modeling of multi-activity engagement. We utilized three datasets in the United States: Panel Study of Income Dynamics, Health and Retirement Study, and Midlife in the United States. After identifying activity items, exploratory and confirmatory factor analysis were used to empirically explore composite activity measures. Findings suggest that discrete activity items can be consolidated into activity domains; however, activity domains differ across datasets depending on availability of activity items. Implications for research and practice are further discussed.     

Unmet Home Care Service Needs of Rural Older Adults With Alzheimer's Disease: A Perspective of Informal Caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

The validity and reliability of a Turkish version of the Poverty-Related Quality of Life (PQoL) questionnaire

Measuring poverty in health care settings may help to identify patients living in poverty and also support development of appropriate policies to reduce health inequalities. The objective of this study was to translate the Poverty-Related Quality of Life Questionnaire into Turkish and then test its validity and reliability for a Turkish patient population. The psychometric properties of the scale were examined by collecting data from 300 patients in emergency departments in three randomly selected hospitals in Ankara, Turkey. The results of the study suggest that the Turkish version of the Poverty-Related Quality of Life Questionnaire has satisfactory validity and reliability.     

Wisdom from Life's Challenges: Qualitative Interviews with Low- and Moderate-Income Older Adults Who Were Nominated as Being Wise

Previous wisdom research tended to focus on cognitive and intellectual aspects, highly educated professionals and/or prominent subjects, and wisdom as the outcome not process. In this study, based on in-depth interviews of 18 low- and moderate income older adults who were nominated as being wise by their aging-service providers, we explored the ways challenging life experiences and coping may have contributed to the development of their wisdom, their ideas/beliefs about the qualities of wisdom, and the ways they may be practicing wisdom in daily life. Their emphasis on interconnectedness and interdependence, forgiveness and patience, and gratitude appears to represent self-transcendental qualities of wisdom. Social work practice and research implications are discussed.     

Older Carers of Adults with a Learning Disability Confront the Future: Issues and Preferences in Planning

The Valuing People White Paper (Department of Health, 2001)requires services to secure a plan for all service-users withlearning disabilities living with older carers and promisesthem and their families more choice and control over how andwhere they live. This paper examines the views of the oldercarers (aged over seventy) of sixty-two adults with a learningdisability about planning for the future. Fifty-six took partin interviews in their own homes and six completed a questionnaire.All carers were white and recruited from one local authorityin response to the requirements of the White Paper. Findingsindicate that a significant proportion (thirty-four—55per cent) is either not ready or is unwilling to make futureplans. Barriers to planning include a perceived lack of needdue to the existence of two carers, a lack of awareness of timescalesinvolved in securing housing, difficulties in letting go, alack of confidence in available housing options, and the existenceof mutually supportive relationships. The findings show a needfor a proactive approach to information and support provisionto enable these families to work through a process of makingplans for the future. This is essential to prevent the needfor emergency placements in response to crisis and in turn toensure that adults with learning disabilities have genuine choiceand involvement in how and where they live.     

Social Support,Retirement Resources,and the Gendered Experiences of Aging for Tunisian Older Adults

Cultural context plays an important role in the experience of aging. The country of Tunisia is of particular interest because limited studies on aging have been done in the past decade. The study examined data collected from Tunisian older adults in an attempt to gain additional information about their experience aging in this culture. The purpose of this study was to identify key information tied to social policy factors that have the potential to impact older adults living in Tunisia. From June to July 2017, semi-structured interviews were completed with 60 older adults covering topics about family history, daily activities, health and health satisfaction, retirement benefits and satisfaction, medical coverage, social support, service availability, feelings of growing older, as well as advice provided to younger adults. Findings include gender differences in retirement resources and benefits, sources of support, and older adults’ self-reported desires for the future. This work adds to the growing body of literature concerning differences in global aging and provides greater awareness of aging in the distinctive context of Tunisia. Additional work should seek to deepen the investigation of the various social policies that impact the Tunisian older adult.     

A Comparison of Rural and Urban Older Adults in Iowa on Specific Markers of Successful Aging

This study examines the differences between rural and urban older adults on level of life satisfaction and depressive symptoms, focusing on the effect of social support. Data were collected through structured interviews at senior centers and senior meal sites in eastern and southeastern Iowa. The Duke Social Support Index (DSSI), the Life Satisfaction Index-Z (LSI-Z), and the Geriatric Depression Scale 15 (GDS15) were used. Correlations (Pearson's r), independent sample t-tests, and multiple regression were computed. Findings indicated that urban residents reported more depressive symptoms, as compared to rural residents. Subjective level of social support was a stronger predictor of life satisfaction and was more negatively related to depressive symptoms among rural than among urban older adults. Results suggest that social workers who work with aging people need to be aware of rural–urban differences in mental health. Furthermore, social workers need to have knowledge of older adults' social networks and work to ensure greater opportunity for social interaction.     

Cycles of Adaptive Strategies Over the Life Course

An increasing number of Australia’s ageing population are aging with long-term physical impairments. This study explored the life experiences of this group using a qualitative approach. In-depth interviews were conducted with 10 disabled Victorians, aged between 51 and 84 years, and an inductive thematic analysis undertaken. A relationship was found between the adaptive strategies that participants developed as they moved through life phases and the impairment stages. The implications of the emergence of a cyclical process of adaptation across the life course. and particularly in respect of aging, delivery of aged-care services and social workers in this sector are discussed.     

Evaluating the Roles of Professional Geriatric Care Managers in Maintaining the Quality of Life for Older Americans

This study examined the roles of Professional Geriatric Care Managers (PGCMs). In-depth telephone surveys were completed with 19 PGCMs. Qualitative data were coded independently by two researchers. PGCMs reported that most clients and/or families seek services in response to a health crisis or because a family member was providing care at a distance. Most emphasized the importance of treating clients as autonomous decision-makers. Services described as most useful were supporting families and caregivers, being an advocate for clients, conducting initial assessments and ongoing follow up, and educating families about community resources and the financing of long term care. Regarding maintaining the quality of life for their older clients, a number of care managers described assisting clients to live independently at home, arranging for transfer to an appropriate level of care, and helping clients die peacefully with dignity. Major challenges PGCMs encountered were family conflicts and obtaining needed services. Recommendations to improve PGCM practice include increasing awareness of services, and establishing minimum professional standards through certification.     

Decoding the Miss Daisy Syndrome: An Examination of Subjective Responses to Mobility Change

The subjective responses associated with personal life space and mobility status were explored. Thirty individuals participated in focus groups based on self-rated disability status, current places visited, and availability. Qualitative analyses revealed that most participants equated personal mobility with driving a vehicle. Attitudes concerning mobility status and preparedness for change varied based on disability level and personal experience. Fear of dependence from future mobility loss was prominent in all groups. Few participants acknowledged significant planning for future retirement from driving or other mobility challenges. An understanding of common attitudes, perceptions and meanings can inform professionals who intervene and support older adults experiencing mobility changes.     

The effects of physical and psychological health on life satisfaction among older adults with a physical disability in South Korea: focus on gender differences

This study aims to investigate whether (a) functional disabilities, self-rated health and depression influence life satisfaction among older adults with a physical disability, and (b) whether the effects of the predictors differ by gender. The study utilises 2008 Korea Welfare Panel Study data. The findings reveal that functional disabilities and depression are negatively associated with life satisfaction, whereas self-rated health is positively related with life satisfaction. In addition, the effects of functional disabilities and income on life satisfaction vary by gender. Implications for practice and policy are discussed.     

Social Support: An Important Factor for Treatment Adherence and Health-related Quality of Life of Patients with End-stage Renal Disease

ABSTRACT

End-stage Renal Disease (ESRD) or chronic kidney disease constitutes a serious public health problem in the United States. The purpose of this study is to examine the causal relationship of perceived social support with treatment adherence and health-related quality of life (HRQOL) of ESRD patients. The study utilized a non-experimental research design and Structural Equation Modeling (SEM) to analyze the data collected from a sample of 413 ESRD patients. The findings of the study supported a statistically significant relationship between perceived social support and HRQOL as well as between perceived social support and treatment adherence. Formulating appropriately targeted interventions to improve social support may help in enhancing the HRQOL and treatment adherence, where both those factors were empirically supported to be related to mortality and hospitalizations in ESRD patients. This study helps to enhance the body of knowledge relating to HRQOL of ESRD patients, and provided foundation for interventions in improving treatment adherence and the HRQOL. Future research may focus on the complexities associated with the HRQOL and treatment adherence in ESRD patients, with emphasis on demographic characteristics and its relationship with social support.