Heather L. Menne

‘Trying to Continue to Do as Much as They Can Do’: Theoretical insights regarding continuity and meaning making in the face of dementia

Face-to-face interviews were conducted with six individuals in the early stages of a dementia. Interviews were initiated to explore the day-to-day experiences of dementia. The commonality that emerged across the interviews was participants’ desire to maintain continuity with their previous way of life while coping with dementia-necessitated changes. We conceptualized this commonality in terms of Atchley’s (1989) articulation of continuity theory and Park and Folkman’s (1997) framework of meaning making. This research highlights how, despite their impairment, individuals with dementia not only are able but strive to maintain continuity and to make meaning of their situations. The results show that it is possible to gain insight from those in the early stages of dementia; the underlying practical and clinical implication is the importance of encouraging the maintenance of personhood by listening to the desires and concerns of those with dementia.

Stress Process Model for Individuals With Dementia

PURPOSE Individuals with dementia (IWDs) face particular challenges in managing and coping with their illness. The experience of dementia may be affected by the etiology, stage, and severity of symptoms, preexisting and related chronic conditions, and available informal and formal supportive services. Although several studies have examined particular features of IWDs illness experience, few draw upon a conceptual model that outlines the global illness experience and the resulting stressors that commence with symptom onset, proliferate over time, and continue through the later stages of cognitive loss. Building on the work of Pearlin and colleagues (1990, Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583-594), this article proposes a stress process model (SPM) for IWDs that conceptualizes and examines the illness experience of IWDs. IMPLICATIONS The proposed SPM for IWDs serves as a guide to (a) consider and understand the short- and long-term complexities of the illness experience for IWDs, (b) investigate specific hypotheses by outlining key stressors in the illness experience and by positing relationships among stressors and outcomes, and (c) help inform the development of interventions to prevent or reduce the negative stressors and enhance the positive experiences of living with a dementing illness.

Decision-Making Involvement Scale for Individuals With Dementia and Family Caregivers

This report describes the development and preliminary psychometric properties of the Decision-Making Involvement Scale for individuals with dementia and family caregivers. Data were collected from 217 individuals with dementia and their respective caregivers. Principal axis factor analysis, Kendall τ, and Pearson correlations were used to determine the Decision-Making Involvement Scales psychometric properties, mean differences of caregiver and individual with dementia, and the relationship between scores of Decision-Making Involvement Scale and measures of well-being. Analyses support a reliable, 1-factor solution of the Decision-Making Involvement Scale for both individuals with dementia and caregivers. Socio-demographic, impairment, and well-being variables are differentially related to the perceptions of how involved the individual with dementia is in decision making. The Decision-Making Involvement Scale provides useful information about daily decision making of an individual with dementia, and it shows promise as a means for understanding the relationship between decision-making involvement and well-being of individuals with dementia and caregivers.

Translation of Two Evidence-Based Programs for Training Families to Improve Care of Persons With Dementia

The need for evidence-based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of evidence regarding the potential for psychosocial interventions to enhance care and decrease costs. To address this need, the Administration on Aging has begun funding translation of evidence-based programs into community settings. Two programs, Reducing Disability in Alzheimers Disease and STAR-Community Consultants (STAR-C), were selected by the Ohio Department of Aging (in collaboration with the Alzheimers Association Chapters in Ohio) and the Oregon Department of Health Services (in partnership with Area Agencies on Aging and the Oregon Chapter of the Alzheimers Association) to be implemented by their staff. Both programs are designed to improve care, enhance life quality, and reduce behavioral problems of persons with dementia and have demonstrated efficacy via randomized controlled trials. This article addresses the developmental and ongoing challenges encountered in the translation of these programs to inform other community-based organizations considering the translation of evidence-based programs and to assist researchers in making their work more germane to their community colleagues.

Predictors of quality of life for individuals with dementia Implications for intervention

Although a growing number of investigations examine the lived experience of individuals with dementia (IWDs), few draw upon a conceptual model to explore inter-relationships among background characteristics, stressors, and outcomes (Menne, 2006). This study is guided by a conceptual model that draws upon the broader stress literature to examine predictors of IWD quality of life. Relying primarily on IWD self-reported data (n = 211), multivariate ordinary least squares regression analysis was used to determine the predictors of IWDs’ quality of life. Results indicate that IWDs who report poorer quality of life are more likely to be African-American, have a non-spousal caregiver, have more depressive symptoms, be less involved in daily decision-making, and have more negative strain with their caregiver. These findings are discussed in the context of current and practical interventions that address the strengths and needs of IWDs and their family caregivers.