Dementia Care and Quality of Life in Assisted Living and Nursing Homes

Zimmerman, Sheryl; Sloane, Philip D.; Williams, Christianna S.; Reed, Peter; Preisser, John S.; Eckert, Jochen; Boustani, Malaz; Dobbs, Debra

doi:10.1093/geront/45.suppl_1.133

Cited by 192 publications

(199 citation statements)

References 29 publications

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“…The ethically and legally endorsed hierarchy of standards for making proxy decisions is (a) known wishes, (b) substituted judgment (i.e., reflecting the person's values), and (c) best interests (i.e., what is perceived to be best for the person) (4,5). Most dementia studies also require the involvement of a capable person to serve as a study partner for the memory-impaired participant (6)(7)(8). Family caregivers usually serve as surrogates and/or study partners in dementia research.…”

Section: Objectivesmentioning

confidence: 99%

Decision Making for Participation in Dementia Research

Black¹,

Wechsler²,

Fogarty³

2012

American Journal of Geriatric Psychiatry

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Objectives-This study examined the decision-making process used by individuals asked to participate in dementia research and their opinions on how future proxy research decisions would or should be made, including participants' preferred ethical standards for decision-making.Design-Cross-sectional qualitative methods. Setting-University research institutions.Participants-Informants were 39 of 46 cognitively impaired individuals (i.e., subjects) who were asked to join one of six dementia studies and 46 study partners or surrogate decision-makers. Measurements-Semi-structured individual interviews were audio recorded and transcribed for content analysis.Results-Within dyads, subjects and surrogates often differed in their perspectives on how decisions were made regarding whether to join a study, and no single method was identified as a predominant approach. While there was only fair agreement within dyads on who ultimately made the decision, subjects and surrogates most often said it was the subject. For future proxy research decisions, subjects and surrogates most often preferred the ethical standard of best interests and least often favored substituted judgment. However, many participants preferred a combination of best interests and substituted judgment or a more complex approach that also considers the interests of others.Conclusions-Individuals with mild to moderate cognitive impairment can and do engage to some extent in the decision-making process for dementia research and can discuss their opinions on how they would want such decisions made for them in the future. These findings support the recommended approach for obtaining proxy consent and subject assent if the individual lacks consent capacity. KeywordsDementia; Clinical research; Decision making; Qualitative research Corresponding Author: Betty S. Black PhD; Department of Psychiatry and Behavioral Sciences; Johns Hopkins Hospital; 600 North Wolfe Street, Meyer 279; Baltimore, MD 21287; Fax: 410-614-1094; Telephone: 410-955-2003; bblack@jhmi.edu. Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. Conflicts of ObjectivesThere is a clear and urgent need for research into the causes, treatments and prevention of Alzheimer disease (AD) and other types of dementia, which affect millions of Americans (1). While individuals in early stage dementia may have the capacity to give informed consent for research, as dementia progresses it leads to a loss of decisional capacity (2). If consent capacity is lacking, research participation is dependent upon a legally authorized representative (i.e., surrogate decision-make...

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Section: Objectivesmentioning

confidence: 99%

Decision Making for Participation in Dementia Research

Black¹,

Wechsler²,

Fogarty³

2012

American Journal of Geriatric Psychiatry

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“…This is related, not only to increasing age and infirmity, but also as a result of the move out of their own home and the loss of nearby friends and neighbours (Froggatt and Payne, 2006 CQC, 2010) asserts that the resulting outcome should reflect service users: 'needs, preferences and diversity'. Indeed, engagement in social activities can be seen to improve quality of life, confidence and a sense of belonging (Department for Education and Skills, 2001;Keily and Flacker, 2003;Zimmerman et al, 2005). …”

Section: Guidancementioning

confidence: 99%

Making life richer: creating a compassionate community

Hall

Shucksmith

2012

Nursing and Residential Care

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“…[67] In the US, between 23% and 42% of residents in re idential care/assisted living (RC/AL) facilities have moderate or severe cognitive impairment, as do over half of nursing home residents. [68] These numbers may under identify those with cognitive impairment if proper assessments were not utilized.…”

Section: Dementia and Housing For The Cognitively Impairedmentioning

confidence: 99%

Planning the Restructuring of Long-Term Care: The Demand, Need and Provision of Institutional Long-Term Care Beds in Newfoundland and Labrador

Hughes

McDonald

Barrett

et al. 2008

Healthc Manage Forum

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The demand for long-term care (LTC) services in Canada is increasing because the population is aging. In Newfoundland and Labrador (NL) nursing homes (NHs) and supervised care (SC) facilities provide long-term care. There may be a mismatch between the provision of LTC beds and the needs of clients. To compare the type and annual rate of clients seeking placement to LTC, incident annual cohorts (N=l496) in five provincial health regions within Newfoundland and Labrador were compared using objective measures of disability, the Alberta Resident Classification Scores (ARCS) and the Resource Utilization Groups (RUGs lll). Client's need was assessed using a decision tree and optimal distribution of LTC beds determined. Regional incidence rates by disability of clients were compared, and whether these differences were associated with differences in the rate of supervised care (SC) or nursing home (NH) beds provided.. Within the four regions of Newfoundland little difference was observed in degree of disability, but Labrador clients differed from the island regions in age, degree and type of disability. Annual rate of presentation for LTC differed by region, with the highest incidence rate of LTC clients in regions with highest rates of supervised care (SC) beds and lowest rates of nursing home (NH) beds.Thirty four% of applicants for LTC were referred for supervised care placement and sixty six %for nursing home. However, seven % had no functional disability being independent for activities of daily living, were continent and without cognitive impairment (CI). Fifteen % of clients recommended for nursing home had no indicators for nursing home. A decision tree suggested that optimal placement was seven % to 11 supportive hou ing, thirty four% to supervi ed care, 17% to upervi ed care for cognitive impairment, and 42% to nursing home.In NL, a large component of institutional LTC is nursing home , whereas the major need is for appropriate supervised care for those with mode t di ability, with or without cognitive impairment. Different approaches to restructuring of long term care in each region are necessary because of differences in rates of presentation for LTC and availability of nursing home and appropriate supervised care beds.111

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Dementia Care and Quality of Life in Assisted Living and Nursing Homes

Abstract: Improvement in resident quality of life may be achieved by improved training and deployment of staff.

Cited by 192 publications

References 29 publications

Decision Making for Participation in Dementia Research

Decision Making for Participation in Dementia Research

Making life richer: creating a compassionate community

Planning the Restructuring of Long-Term Care: The Demand, Need and Provision of Institutional Long-Term Care Beds in Newfoundland and Labrador

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