2016 Alzheimer's disease facts and figures

Dementia prevention, intervention, and care

Statistical Analysis with Missing Data

This report provides information to increase understanding of the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality rates, health expenditures and costs of care, and effect on caregivers and society in general. It also explores the roles and unique challenges of long‐distance caregivers, as well as interventions that target those challenges. An estimated 5.2 million Americans have AD. Approximately 200,000 people younger than 65 years with AD comprise the younger onset AD population; 5 million comprise the older onset AD population. Throughout the coming decades, the baby boom generation is projected to add about 10 million to the total number of people in the United States with AD. Today, someone in America develops AD every 68 seconds. By 2050, one new case of AD is expected to develop every 33 seconds, or nearly a million new cases per year, and the total estimated prevalence is expected to be 13.8 million. AD is the sixth leading cause of death in the United States and the fifth leading cause of death in Americans age 65 years or older. Between 2000 and 2010, the proportion of deaths resulting from heart disease, stroke, and prostate cancer decreased 16%, 23%, and 8%, respectively, whereas the proportion resulting from AD increased 68%. The number of deaths from AD as determined by official death certificates (83,494 in 2010) likely underrepresents the number of AD‐related deaths in the United States. A projected 450,000 older Americans with AD will die in 2013, and a large proportion will die as a result of complications of AD. In 2012, more than 15 million family members and other unpaid caregivers provided an estimated 17.5 billion hours of care to people with AD and other dementias, a contribution valued at more than $216 billion. Medicare payments for services to beneficiaries age 65 years and older with AD and other dementias are three times as great as payments for beneficiaries without these conditions, and Medicaid payments are 19 times as great. Total payments in 2013 for health care, long‐term care, and hospice services for people age 65 years and older with dementia are expected to be $203 billion (not including the contributions of unpaid caregivers). An estimated 2.3 million caregivers of people with AD and other dementias live at least 1 hour away from the care recipient. These “long‐distance caregivers” face unique challenges, including difficulty in assessing the care recipient's true health condition and needs, high rates of family disagreement regarding caregiving decisions, and high out‐of‐pocket expenses for costs related to caregiving. Out‐of‐pocket costs for long‐distance caregivers are almost twice as high as for local caregivers.

2013 Alzheimer's disease facts and figures

Background: Special care facilities for patients with dementia gain increasing attention. However, an overview of studies examining the differences between care f

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Special Care Units and Traditional Care in Dementia: Relationship with Behavior, Cognition, Functional Status and Quality of Life - A Review

Long-term care policies and programs in the United States suffer from a major flaw: They are balanced toward a model of nursing home care that, regardless of its technical quality, tends to be associated with a poor quality of life for consumers. This article proposes quality-of-life domains-namely, security, comfort, meaningful activity, relationships, enjoyment, dignity, autonomy, privacy, individuality, spiritual well-being, and functional competence. It argues that these kinds of quality-of-life outcomes are minimized in current quality assessment and given credence only after health and safety outcomes are considered. Five trends are reviewed that might lead to a more consumer-centered emphasis on quality of life: the disability rights movement, the emphasis on consumer direction, the growth of assisted living, increasing attention to physical environments, and efforts to bring about culture change in nursing homes. Building on these trends, the article concludes with strategies to move beyond current stalemates and polarized arguments toward forms of long-term care that are more compatible with a good quality of life.

Long-Term Care and a Good Quality of Life Bringing Them Closer Together

Background. Quality of life (QOL) is a goal for nursing home residents, but measures are needed to tap this phenomenon. Methods. In-person QOL interviews were attempted for 1988 residents, stratified by cognitive functioning, from 40 nursing homes in five states. Likert-type response options were used with reversion to dichotomous responses when necessary; z-score transformations were used to combine the formats. Tests of internal consistency and confirmatory factor analysis were performed; cluster analysis was used to shorten the scales. Correlations between domain scores were examined, and tests of convergent validity performed. Analyses were repeated for subgroups based on cognitive functioning levels. Results. Long QOL scales were constructed for 1316 of the 1988 residents, including many with substantial cognitive impairment. Confirmatory factor analysis confirmed 10 QOL domains. Cronbach alphas ranged from .76 to .52. The majority (93%) of the 45 possible interscale correlations among domains were below .l4 and the rest were between .4 and .5. QOL scales were correlated with, but distinct from, residents’ emotions ratings and overall satisfaction, and each was correlated with a corresponding summary rating for the domain. Conclusions. QOL can be feasibly measured from resident self-report for much of the nursing home population, including cognitively impaired residents. Additional research is suggested on the measures, but the approach has promise for regulation, continuous quality improvement, and public information.

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Quality of Life Measures for Nursing Home Residents

Assessing the Elderly: A Practical Guide to Measurement

OBJECTIVES: To determine the effects of a small-house nursing home model, THE GREEN HOUSE® (GH), on residents' reported outcomes and quality of care.

DESIGN: Two-year longitudinal quasi-experimental study comparing GH residents with residents at two comparison sites using data collected at baseline and three follow-up intervals.

SETTING: Four 10-person GHs, the sponsoring nursing home for those GHs, and a traditional nursing home with the same owner.

PARTICIPANTS: All residents in the GHs (40 at any time) at baseline and three 6-month follow-up intervals, and 40 randomly selected residents in each of the two comparison groups.

INTERVENTION: The GH alters the physical scale environment (small-scale, private rooms and bathrooms, residential kitchen, dining room, and hearth), the staffing model for professional and certified nursing assistants, and the philosophy of care.

MEASUREMENTS: Scales for 11 domains of resident quality of life, emotional well-being, satisfaction, self-reported health, and functional status were derived from interviews at four points in time. Quality of care was measured using indicators derived from Minimum Data Set assessments.

RESULTS: Controlling for baseline characteristics (age, sex, activities of daily living, date of admission, and proxy interview status), statistically significant differences in self-reported dimensions of quality of life favored the GHs over one or both comparison groups. The quality of care in the GHs at least equaled, and for change in functional status exceeded, the comparison nursing homes.

CONCLUSION: The GH is a promising model to improve quality of life for nursing home residents, with implications for staff development and medical director roles.

https://blog.thegreenhouseproject.org/wp-content/uploads/2011/07/Outcomes-in-Small-House-Nursing-Homes-A-Longitudinal-Evaluation-of-the-Initial-Green-House-Program.pdf

Resident outcomes in small-house nursing homes: a longitudinal evaluation of the initial green house program.

Purpose: This article identifies challenges in defining, measuring, and studying quality of life of nursing home residents. Design and Method: A theoretical analysis was conducted based on literature and the author’s own large-scale studies of quality of life of nursing home residents. Results: Measuring quality of life is a relatively low priority in nursing homes because of focus on markers of poor quality of care, pervasive sense that nursing homes are powerless to influence quality of life, and impatience with research among those dedicated to culture change. The research argues that the resident voice must be sought in reaching operational definitions for quality of life and as reporters on the quality of their own lives, and that resident burden is a spurious concern that should not deter direct interviews with residents. Five challenges in measuring quality of life were identified: (a) designing questions with appropriate response categories and time frames, (b) developing a sampling strategy, (c) aggregating information at the individual andfacilitylevel,(d)validatingwhatare ultimately subjective constructs, and (e) developing an approach using observations and proxies to assess quality of life for approximately the 40% of the residents who will be impossible to interview. Implications: Although residents’ perceived quality of life is partly a product of their health, social supports, and personalities, nursing homes can directly influence quality of life through their polices, practices, and environments, and, indirectly, through their approaches to family and community. A research agenda is needed, which includes both methodological research and studies of the correlates of quality of life.

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Rosalie A. Kane

Papers

Long-Term Care and a Good Quality of Life Bringing Them Closer Together

Quality of Life Measures for Nursing Home Residents

Assessing the Elderly: A Practical Guide to Measurement

Resident outcomes in small-house nursing homes: a longitudinal evaluation of the initial green house program.

Definition, Measurement, and Correlates of Quality of Life in Nursing Homes: Toward a Reasonable Practice, Research, and Policy Agenda