Recently, an international consensus report on conceptualizing, measuring, and applying quality for life for persons with intellectual/developmental disabilities (Schalock et al., 2002) was published in Mental Retardation (MR). In another MR article, Perry and Felce (2002) reported on the difficulties in successfully measuring subjective appraisal of quality of life using proxy respondents, who are often relied upon when persons with developmental disabilities have difficulty in speaking for themselves. We are involved in the redesign of services and the retraining of staff to address the residential, day program, and other care needs of a growing population of persons with developmental disabilities who are experiencing symptoms of Alzheimer's dementia. The lessons from Perry and Felce appear particularly pertinent for a population doubly cognitively compromised by an existing developmental disability and by increasing symptoms of Alzheimer's dementia. Our goal here is to go further and express a concern that quality of life may represent something very different when experiencing both aging and symptoms of Alzheimer's dementia than what was valued in younger years. Indeed, service systems not recognizing this reality and continuing to pursue prevalent programming approaches instead risk compromising quality of life. Finally, although recognizing the difficulties in developing measures of quality of life concepts, we suggest a model of key indicators for future investigation.
Quality of Life for Persons With Developmental Disabilities
Many concepts have emerged from the developmental disabilities services literature to conceptualize aspects of the quality of life of persons with developmental disabilities, particularly with regard to their life in the community. Schalock and colleagues (2002) described subjective and objective quality of life for persons with developmental disabilities as (a) comprising the same factors and relationships as for persons without identified disabilities; (b) occurring when major needs and wants are met with opportunities for enrichment in all major life areas; (c) based on the individual's needs, wants and choices, and reflects community participation including family, intimate relationships, friends, neighbors, work, and citizenship. Others have operationalized and measured important aspects of this quality of life as normalization, community integration, self-determination, life satisfaction, well-being, and the good life (Duvdevany, Ben-Zur, & Amber, 2002; Gardner & Chapman, 1993; Heller, Miller, & Hsieh, 2002; Reinders, 2002; Wehmeyer & Metzler, 1995). We argue here that because current services tend to be focused upon children and young and middle adults, the values in these operationalizations tend to reflect those ages. The challenge in our work with persons who have Alzheimer's dementia is whether these same concepts and values apply when one ages and when one experiences symptoms of Alzheimer's dementia.
Aging and Alzheimer's Dementia Among Persons With Developmental Disabilities
Aging represents the success of the resilience of people with developmental disabilities, advances in medical care, advocacy and self-advocacy, and the development by providers of quality living environments and their support of enriching lives. Life expectancy for persons with developmental disabilities now approaches that of the general population (Hogg, Lucchino, Wang, & Janicki, 2001). However, such increases in life expectancy also expose a growing number of persons with developmental disabilities to age-related diseases, such as Alzheimer's dementia. There is some argument about whether the risk for most persons with developmental disabilities is greater or the same as the general population, but increasing recognition that persons with Down syndrome are at greater risk for occurrence and for on-set, on average, at younger ages (Dalton & Janicki, 1999). As the population of persons with developmental disabilities redistributes into older ages, providers are increasingly challenged to realign services to address this reality. The Edinburgh Principles were developed to encourage maintenance of care of persons with Alzheimer's dementia in the community (Wilkonson & Janicki, 2001). There are reports that some providers are supporting aging in place, but facing pressure to develop specialized Alzheimer's dementia units and to transfer affected individuals to more restrictive settings (Janicki, McCallion, & Dalton, 2002). We suggest that this reflects a reactive rather than a proactive approach to Alzheimer's dementia care concerns and reliance on programming models whose quality of life outcomes are no longer as relevant to care.
Quality of Life for Persons As They Age
Recently, the literature on successful aging for all persons has been revisited. Kahn (2002) argued that successful aging occurs when there is a relatively low risk of disease and disease-related disability, high mental and physical functioning, active engagement with others, and participation in productive activities. He also included being able to accept age-associated decrements in functioning and doing the best with the level of functioning one has, and the need for society to apply external resources to increase opportunities and facilitate behaviors that make for success in older age. Although consistent with core principles of quality of life previously outlined, we argue that these concepts of decline rather than ever-increasing function and the need to use supportive resources in different ways are not reflected yet in the discussions of quality of life for persons with developmental disabilities as they age, and this has lead to our belief that their needs do not “fit” in existing service provision.
Quality of Life for Persons With Alzheimer's Dementia
In the literature on Alzheimer's dementia care, additional ideas for consideration have been introduced. Lawton (1991) suggested that there are four key concepts: (a) behavioral competence—continued ability to manage or to be supported to manage critical decisions and day-to-day life, (b) mastery of the environment—continued ability to independently or with support negotiate living and work areas (assumes ability to remain in familiar places), (c) psychological well-being—freedom from depression and other untreated concerns, and (d) perceived quality of life—reflecting the views and desires of the person with dementia. Further, in a review of quality of life and Alzheimer's dementia studies, Longsdon and colleagues (2002) pointed out behaviors and noncognitive (and treatable) concerns, such as depression and pain, do have a negative impact on quality of life. Good health and health care have been emphasized in considerations of quality of life for persons with developmental disabilities, but the ideas here suggest more specific emphases on pain, challenging behavior management (and avoidance), and psychosocial health. Finally, this literature suggests that what is important to quality of life may change as the disease progresses and living arrangements change. This point is being reinforced by members of a growing self-advocacy movement of persons with early stage Alzheimer's dementia (Raushi, personal communication, 2002). We argue here that such a health-focused and dynamic approach to quality of life has yet to be operationalized for persons with developmental disabilities.
Quality of Life and Residential Programming
Because of reports of people with developmental disabilities and Alzheimer's dementia being transferred to more restrictive settings, investigators have been encouraged to determine what is happening in residential environments. Two principal concerns arise. (a) Programming approaches appear to continue to assume maintained or increasing independence for the person with Alzheimer's dementia, whereas decline is being experienced. (b) Staffing patterns, numbers, and training no longer meet the needs of persons living there, resulting in staff experiencing objective burden in terms of increased care demands and subjective burden in terms of the concerns they feel as they watch someone they care for decline (McCallion & McCarron, 2002; McCarron, Gill, Lawlor, & Beagley, 2002). Addressing the first will require modification of prevalent quality of life ideas to recognize that what represents quality of life changes with Alzheimer's dementia and as Alzheimer's dementia progresses. The second requires recognition that quality of life for the person is also about the quality of work life of the caregiver.
A New Model for Key Indicators of Quality of Life in Alzheimer's Dementia Care
We summarize prevalent concepts of quality of life for persons with developmental disabilities as emphasizing being in the community, making one's own decisions, building a network of relationships, holding a job, and being more independent this year than last year. We recommend that those concepts be combined and modified with the ideas we reviewed for successful aging and Alzheimer's dementia care for those without known developmental disabilities and offer the following set of indicators of quality of life as the basis for the development of a more proactive approach to offering Alzheimer's dementia care in the community homes: (a) absence of pain, (b) maintenance of health, (c) psychosocial well-being, (d) skills maintenance with support when one declines, (e) absence of and supportive responses to problem behaviors, (f) leisure and community participation, (g) family and friends, (h) dementia-focused programming, (i) supportive environments, and (j) alleviation of caregiver burden. The challenge as noted by Perry and Felce (2002) is to find ways to successfully measure each of these indicators.
Philip McCallion, PhD (Email: email@example.com), Professor and Director, Center for Excellence in Aging Services, University at Albany, Albany, NY 12222. Mary McCarron, PhD, Lecturer, School of Nursing and Midwifery, Trinity College Dublin, 24 D'Olier St., Dublin 2 Ireland.