2016 Alzheimer's disease facts and figures

This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on family caregivers, the dementia workforce and society. The Special Report discusses consumers' and primary care physicians' perspectives on awareness, diagnosis and treatment of mild cognitive impairment (MCI), including MCI due to Alzheimer's disease. An estimated 6.5 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available. Alzheimer's disease was officially listed as the sixth‐leading cause of death in the United States in 2019 and the seventh‐leading cause of death in 2020 and 2021, when COVID‐19 entered the ranks of the top ten causes of death. Alzheimer's remains the fifth‐leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. More than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer's or other dementias in 2021. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $271.6 billion in 2021. Its costs, however, extend to family caregivers’ increased risk for emotional distress and negative mental and physical health outcomes — costs that have been aggravated by COVID‐19. Members of the dementia care workforce have also been affected by COVID‐19. As essential care workers, some have opted to change jobs to protect their own health and the health of their families. However, this occurs at a time when more members of the dementia care workforce are needed. Average per‐person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2022 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $321 billion. A recent survey commissioned by the Alzheimer's Association revealed several barriers to consumers’ understanding of MCI. The survey showed low awareness of MCI among Americans, a reluctance among Americans to see their doctor after noticing MCI symptoms, and persistent challenges for primary care physicians in diagnosing MCI. Survey results indicate the need to improve MCI awareness and diagnosis, especially in underserved communities, and to encourage greater participation in MCI‐related clinical trials.

2022 Alzheimer's disease facts and figures

While existing reviews have identified significant predictors of nursing home admission, this meta-analysis attempted to provide more integrated empirical findings to identify predictors. The present study aimed to generate pooled empirical associations for sociodemographic, functional, cognitive, service use, and informal support indicators that predict nursing home admission among older adults in the U.S. Studies published in English were retrieved by searching the MEDLINE, PSYCINFO, CINAHL, and Digital Dissertations databases using the keywords: "nursing home placement," "nursing home entry," "nursing home admission," and "predictors/institutionalization." Any reports including these key words were retrieved. Bibliographies of retrieved articles were also searched. Selected studies included sampling frames that were nationally- or regionally-representative of the U.S. older population. Of 736 relevant reports identified, 77 reports across 12 data sources were included that used longitudinal designs and community-based samples. Information on number of nursing home admissions, length of follow-up, sample characteristics, analysis type, statistical adjustment, and potential risk factors were extracted with standardized protocols. Random effects models were used to separately pool the logistic and Cox regression model results from the individual data sources. Among the strongest predictors of nursing home admission were 3 or more activities of daily living dependencies (summary odds ratio [OR] = 3.25; 95% confidence interval [CI], 2.56–4.09), cognitive impairment (OR = 2.54; CI, 1.44–4.51), and prior nursing home use (OR = 3.47; CI, 1.89–6.37). The pooled associations provided detailed empirical information as to which variables emerged as the strongest predictors of NH admission (e.g., 3 or more ADL dependencies, cognitive impairment, prior NH use). These results could be utilized as weights in the construction and validation of prognostic tools to estimate risk for NH entry over a multi-year period.

https://link.springer.com/content/pdf/10.1186%2F1471-2318-7-13.pdf

Predicting nursing home admission in the U.S: a meta-analysis.

Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

Families Caring for an Aging America

Objective: To determine the effectiveness of a counseling and support intervention for spouse caregivers in delaying time to nursing home placement of patients with Alzheimer disease (AD), and identify the mechanisms through which the intervention accomplished this goal. Methods: We conducted a randomized controlled trial of an enhanced counseling and support intervention compared to usual care. Participants were a referred volunteer sample of 406 spouse caregivers of community-dwelling patients who had enrolled in the study over a 9.5-year period. The intervention consisted of six sessions of individual and family counseling, support group participation, and continuous availability of ad hoc telephone counseling. Structured questionnaires were administered at baseline and at regular follow-up intervals, every 4 months for the first year and every 6 months thereafter. Cox proportional hazard models were used to test the effects of the intervention on the time to nursing home placement for the patients after controlling for multiple time-invariant and time-dependent predictors of placement. Results: Patients whose spouses received the intervention experienced a 28.3% reduction in the rate of nursing home placement compared with usual care controls (hazard ratio = 0.717 after covariate adjustment, p = 0.025). The difference in model-predicted median time to placement was 557 days. Improvements in caregivers’ satisfaction with social support, response to patient behavior problems, and symptoms of depression collectively accounted for 61.2% of the intervention’s beneficial impact on placement. Conclusion: Greater access to effective programs of counseling and support could yield considerable benefits for caregivers, patients with Alzheimer disease, and society.

https://brainxchange.ca/Public/Files/Supporting-Family-Caregivers/Nursing-Homes.aspx

Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease

Although predictors of nursing home placement have attracted a good deal of attention in gerontological research, the type and amount of family assistance offered to caregivers prior to institutionalization has not been extensively examined. This study analyzed the impact of family help on the timing of placement among cognitively impaired care recipients. Using longitudinal data from the Adult Day Care Collaborative Study, an event-history analysis was performed to determine the effects of family help after sociodemographic characteristics, caregiving stressors, and indicators of caregiver well-being were taken into account. Results showed that caregivers were far less likely to institutionalize their relatives when family members provided overnight help and assisted with activities of daily living care. These findings suggest that specific types of family help play an important role in delaying nursing home placement among older adults suffering from dementia.

/pdf/predictors-of-institutionalization-of-cognitively-impaired-38wb948wyn.pdf

Predictors of Institutionalization of Cognitively Impaired Elders Family Help and the Timing of Placement

Objective: The authors examine the impact of two caregiving stressors, care receivers' behavior problems (an objective stressor) and caregivers' feelings of overload (a subjective stressor), on three dimensions of caregiver health. Method: The participants were 234 primary caregivers of elderly relatives with dementia living in the community who completed a comprehensive interview about their current care situation, including stressors and health. Results: Higher levels of both objective and subjective stressors were associated with all three dimensions of caregiver health: poorer self-reported health, more negative health behaviors, and greater use of health care services. The association between objective stressors and health was mediated by caregivers' feelings of overload. Conclusions: These findings demonstrate caregivers' vulnerability to the effects of stressors across three dimensions of health and also underscore the importance of subjective appraisals of stress.

The caregiver stress process and health outcomes.

Purpose The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counseling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention that increases the care receiver's active participation in his or her care plan, develops positive communication patterns between the caregiver and care receiver, increases knowledge and understanding about available services, and assists the dyad through the emotional turbulence of a diagnosis of Alzheimer's disease or other dementing condition. Design and methods EDDI was developed in response to research and clinical findings that suggested that care dyads in the early stages of dementia and dementia care are able to engage in a dialogue about future preferences for care, and that this discussion could address some of the uncertainty and worry experienced by each member of the dyad. As part of a feasibility trial, 31 dyads participated in the EDDI program. Measures were obtained on the intervention's implementation, including the number of sessions attended, caregiver and care receiver ratings of treatment acceptability and effectiveness, and counselor ratings of treatment effectiveness. Results Participant and counselor evaluations of the EDDI protocol indicated that the intervention was acceptable and satisfactory to the caregivers, care receivers, and counselors, and that the intervention's goals and objectives were achievable. Implications These findings indicate that individuals with early-stage dementia and their family caregivers are able to participate in and benefit from a structured intervention that focuses on care planning for future needs.

Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia

The study examines physical and functional health problems and their relationship to the activity of daily living (ADL) disability experience of a cross-section of Swedish men and women aged over 80 years (N = 203). Using a model of disablement, the relationships among disability variables were simultaneously explored. Results confirmed relatively high rates of disability in this age group, with 36% of respondents having some basic ADL difficulty. Functional impairments (vision and grip strength) and functional limitations (upper and lower body limitations and cognition) were strongly related to disability, with functional limitations being a main driving force for disability. The role of psychosocial variables (depression, subjective health, and social integration) was explored through subsequent model testing. Results showed depression, subjective health, and social integration to potentially mediate the influence of risk factors, impairments, and limitations in the model. The study suggests that modifying psychosocial experiences can greatly affect the disability experience.

The Disablement Process in Very Late Life A Study of the Oldest-Old in Sweden

Despite widespread interest in the challenges facing family caregivers of people with dementia, the literature on empirically-validated treatments has grown slowly. One issue that has limited its growth has been that many of the existing treatment trials show weak or only modest benefits on caregiver outcomes. An examination of the literature suggests that the research strategies used for testing the effectiveness of interventions have not been optimal and the limitations in their approaches may have contributed to their limited findings of improvement. We identify some of the methodological issues that may have affected previous trials and suggest strategies for addressing these issues.

Elia E. Femia

Papers

Predictors of Institutionalization of Cognitively Impaired Elders Family Help and the Timing of Placement

The caregiver stress process and health outcomes.

Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia

The Disablement Process in Very Late Life A Study of the Oldest-Old in Sweden

A future for family care and dementia intervention research? Challenges and strategies