Philip McCallion

Predictors of health and human services use by persons with dementia and their family caregivers

The aim of this study was to identify predictors of the use of health and human services by community residing persons with dementia and their family caregivers. Telephone interviews were conducted with a sample of 608 primary caregivers of community residing persons with dementia who were randomly selected from a state-wide dementia registry. The Anderson Behavioral Model of Health Care Use was used as the analytic framework. Hierarchical ordinary least squares regression models were developed to analyze predictors of health and human services use. Predisposing, enabling, and need variables explained 40.9% of the variance in service use, 29.8% of the variance in health service use, and 38.1% of the variance in the use of human services. Enabling variables explained more variance in the use of health and human services than did need or predisposing variables. In contrast to the health services utilization literature that points to the importance of need variables, the results of this study lend support to findings in the caregiving literature that indicate that enabling variables are at least as important as need variables in predicting the use of community services by family caregivers of persons with dementia.

An Evaluation of a Family Visit Education Program

OBJECTIVES: This study was designed to examine the impact of the Family Visit Education Program (FVEP) on family members, nursing staff, and nursing home residents with dementia.

The Impact of Validation Group Therapy on Nursing Home Residents With Dementia

This study examined the effectiveness of validation group therapy for reducing problem behav iors, use of physical restraints, and use of psychotropic medications, and for increasing positive social interactions and psychosocial well-being in nursing home residents with dementia. In four skilled-care nursing homes, 88 residents with dementia were randomly assigned to a group receiving validation therapy (VT), a social contact (SC) group, or a usual care (UC) control group, and were assessed at baseline, 3 months, and 1 year. The nursing staff reported that VT participants showed less physically and verbally aggressive behavior and were not as depressed as residents in the SC or UC group. VT was not effective, however, in reducing the use of physical restraints or the use of psychotropic medications, and it was less effective than SC or UC in reducing physically nonaggressive problem behaviors.

Patterns of multimorbidity in an older population of persons with an intellectual disability: results from the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA).

UNLABELLED Multimorbidity (2 or more chronic conditions) is being widely studied in older populations and this study explores both the relevance of emerging conceptualizations and the extent to which multimorbidity is a feature of aging in persons with an intellectual disability. METHODS Data was generated from wave one of the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA) which included 753 persons with an ID aged 40 years and over. Information on the presence of 12 chronic conditions was collected using a standardized protocol administered in face to face interviews with persons with ID and/or their caregivers. Prevalence of multimorbidity was established and patterns were examined using logistic regression models. The patterns of multimorbidity for people with ID that emerged were then compared with those reported for other older adults. RESULTS Multimorbidity was established for 71% of the IDS-TILDA sample with women at highest risk and rates of multimorbidity was high (63%) even among those aged 40-49 years. Eye disease and mental health problems were most often associated with a second condition and the most prevalent multimorbidity pattern was mental health/neurological disease. DISCUSSION Further investigation, attention to mental health issues and the development of treatment guidelines that recognize chronic condition disease load are critical to mitigating the negative impact of multiple chronic conditions and preventing additional disability in adults with ID as they age.

Social Inclusion and Community Participation of Individuals with Intellectual/Developmental Disabilities

As more individuals with intellectual/developmental disabilities are physically included in community life, in schools, neighborhoods, jobs, recreation, and congregations, the challenge of going beyond physical inclusion to true social inclusion becomes more apparent. This article summarizes the status of the research about community participation and social inclusion, summarizes some debates and points of contention, notes emerging research issues, and highlights needed areas of research. It is clear that most research on these topics has been conducted with individuals who are in paid formal services, and there are great needs for understanding the community participation of individuals who live on their own or with their families, as well as researching social inclusion by focusing on the attitudes and experiences of community members themselves, not just individuals with disabilities and paid providers.

Grandparent Caregivers I: Characteristics of the Grandparents and the Children with Disabilities for Whom They Care

Summary Using an informal data capture technique, 164 grandparents caring for 208 children with developmental delay or diagnosed disabilities were surveyed in New York City to determine their health status, emotional state, use of formal and informal services, and general life situation. The vast majority of grandparents were female (96%) and African-American (80%). Their ages ranged from 40 to 82. Generally they had cared for at least one grandchild for an average of seven years. The data showed that for these grandparents (1) caregiving was an all-consuming role, (2) their lives were fraught with uncertainty and they could not access sufficient formal and informal supports, and (3) they were constantly worried about the future.

A prospective 14-year longitudinal follow-up of dementia in persons with Down syndrome

BACKGROUND To examine dementia characteristics, age at onset and associated comorbidities in persons with Down syndrome. METHOD Seventy-seven people with Down syndrome aged 35 years and older were followed longitudinally. The diagnosis of dementia was established using the modified International Classification of Diseases, Tenth Revision (ICD-10) criteria and a combination of objective and informant-based tests. Cognitive tests included the Test for Severe Impairment and the Down Syndrome Mental Status Examination; adaptive behaviour was measured using the Daily Living Skills Questionnaire. The Dementia Questionnaire for Mental Retarded Persons (DMR) was added to the test battery in 2005 and this study includes follow-up data for this instrument. RESULTS Over the 14-year period the average age of diagnosis at 55.41 years (SD = 7.14) was in the higher range of previously reported estimates (51-56 years) and a median survival of 7 years after diagnosis. Persons with dementia in the sample were significantly older than persons without dementia. The presence of dementia was also associated with epilepsy and sensory impairments. Among instruments the DMR appeared most sensitive to tracking change in symptoms over time before diagnosis. CONCLUSION The previously reported high risk levels for dementia among people with Down syndrome was confirmed in these data as was the value of the instruments utilised in tracking decline and helping to confirm diagnosis even in persons with severe intellectual disability.

Depression and Caregiver Mastery in Grandfathers Caring for Their Grandchildren

Kin caregiving research tends to focus on the experiences of grandmothers. Often unnoticed and underserved are grandfathers who also take on this responsibility. Here, two groups of grandfathers participated in focus group interviews to discuss their experiences as caregivers to their grandchildren. Common themes for the grandfathers were the feeling of missing freedom, experiencing child rearing differently now than they had with their own children, and fear of what would happen to the children should their health fail. Thirty-three grandfathers also answered questions about themselves; their grandchild; need, use, and satisfaction with formal services; depression; and caregiving mastery. A sample of 33 grandmothers selected from a previous study was matched to the grandfathers on age, race, and marital status. Differences in depressive symptoms between the grandfathers and grandmothers were statistically significant. There was no statistically significant difference between the grandparent caregivers on caregiving mastery. These findings suggest that there may be differences in the impact of caregiving for grandmothers and grandfathers. These differences should be further investigated.

Ageing and intellectual disabilities: a review of recent literature

Purpose of review Summary of recent research and research-based recommendations to address health needs and dementia-related concerns in older persons with intellectual disabilities. Recent findings Use of longitudinal designs has expanded our knowledge of the changes experienced in old age by persons with intellectual disabilities. Investigation of amyloid deposition in persons with Down syndrome continues to expand our understanding of dementia presentation and potentially of therapeutic interventions. More knowledge is now available on the properties of assessment instruments leading to recommendations for use under particular circumstances. Furthermore, randomized trials support the use of preventive and health supportive strategies. Summary As longevity increases for persons with intellectual disabilities, research continues to support good health outcomes and in particular to address the challenges posed by dementia.

Grandparent Carers II: Service Needs and Service Provision Issues

Summary A demonstration project was undertaken in two of New York Citys five boroughs using an intervention model to assess how a three-prong approach using outreach, provision of support groups, and case management could be used to aid grandparents acting as primary carers for children with developmental delay or disabilities. Three small community-based agencies participated in the demonstration. Several common themes were identified that warrant attention when working with older adults who assume later-age parenting roles: (1) recruitment, (2) pressing grandparent problems, (3) unresponsive service systems, (4) falling between the cracks, (5) mutual support, and (6) need for long-term planning.