Betty S. Black

Research on treating neuropsychiatric symptoms of advanced dementia with non-pharmacological strategies, 1998–2008: a systematic literature review

BACKGROUND Advanced dementia is characterized by severe cognitive and functional impairments that lead to almost total dependency in self-care. Neuropsychiatric symptoms (NPS) are common in advanced dementia, diminishing quality of life and increasing the care burden. The challenge for health care providers is to find safe and effective treatments. Non-pharmacological interventions offer the potential for safer alternatives to pharmacotherapy, but little is known about their efficacy. This review evaluates the published literature on non-pharmacological interventions for treating NPS in advanced dementia. METHODS A literature search was undertaken to find non-pharmacological intervention studies published between 1998 and 2008 that measured NPS outcomes in individuals diagnosed with advanced dementia. Strict inclusion criteria initially required that all study participants have severe or very severe dementia, but this range was later broadened to include moderately severe to very severe stages. RESULTS Out of 215 intervention studies, 21 (9.8%) specifically focused on treatments for individuals with moderately severe to very severe dementia. The studies provide limited moderate to high quality evidence for the use of sensory-focused strategies, including aroma, preferred or live music, and multi-sensory stimulation. Emotion-oriented approaches, such as simulated presence may be more effective for individuals with preserved verbal interactive capacity. CONCLUSIONS Most studies of interventions for dementia-related NPS have focused on individuals with mild to moderate cognitive impairment. Individuals with severe cognitive impairment do not necessarily respond to NPS treatments in the same manner. Future studies should be specifically designed to further explore the stage-specific efficacy of non-pharmacological therapies for patients with advanced dementia. Areas of particular need for further research include movement-based therapies, hands-on (touch) therapies, and interventions that can be provided during personal care routines. Interventions appear to work best when they are tailored to balance individual arousal patterns.

Advanced Dementia: State of the Art and Priorities for the Next Decade

Dementia is a leading cause of death in the United States. This article outlines the current understanding of advanced dementia and identifies research priorities for the next decade. Research over the past 25 years has largely focused on describing the experience of patients with advanced dementia. This work has delineated abundant opportunities for improvement, including greater recognition of advanced dementia as a terminal illness, better treatment of distressing symptoms, increased access to hospice and palliative care services, and less use of costly and aggressive treatments that may be of limited clinical benefit. Addressing those opportunities must be the overarching objective for the field in the coming decade. Priority areas include designing and testing interventions that promote high-quality, goal-directed care; health policy research to identify strategies that incentivize cost-effective and evidence-based care; implementation studies of promising interventions and policies; and further development of disease-specific outcome measures. There is great need and opportunity to improve outcomes, contain expenditures, reduce disparities, and better coordinate care for the millions of persons in the United States who have advanced dementia.

Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study

To determine the prevalence and correlates of unmet needs in a sample of community‐residing persons with dementia (PWD) and their informal caregivers.

Measuring quality of life in dementia : purposes, goals, challenges and progress

The choice of outcomes in clinical research should be influenced by a linkage between the targeted symptom or disorder and the outcome being measured, the clinical meaningfulness of the outcome, and the ability to measure the outcome accurately. Dementia, defined as a syndrome consisting of disorders that impair two or more distinct cognitive capacities, occur in clear consciousness, and begin in adulthood, presents unique challenges in the choice of appropriate outcomes for treatment trials.

Suicidality in Older African Americans: Findings From the EPOCH Study

The authors examined the current frequency of suicidality and associated characteristics in a sample of 835 African-American older adult residents of six urban public housing developments who consented to participate in an intervention trial of mobile outreach. The frequency of passive and active suicidal ideation was 2.5% and 1.4%, respectively. Characteristics of individuals with both active and passive suicidality included elevated anxiety, social dysfunction, somatic symptoms, low social support, lack of a confidant, and low religiosity. Characteristics of those with passive, but not active, ideation also included older age, lower levels of education, elevated depressive symptoms, poorer cognitive functioning, and having recently discussed emotional problems with a healthcare provider. The characteristics of those reporting active, but not passive, ideation included having a history of mental health treatment and reporting no instrumental support. Multivariate analyses indicated that depression and religiosity were uniquely associated with passive suicidal ideation, and life satisfaction and religiosity were uniquely associated with active suicidal ideation. The authors discuss implications of these findings and offer suggestions for research and clinical practice.

Quality of Life in Nursing Home Residents with Advanced Dementia

OBJECTIVES: To examine quality of life (QOL) in nursing home (NH) residents with advanced dementia and identify correlates of QOL near the end of life.

Content of Advance Directives for Individuals With Advanced Dementia

Objectives: To examine how people with end-stage dementia have conveyed their wishes for end-of-life care in advance directives. Method: The documents of 123 residents of three Maryland nursing homes, all with end-stage dementia, were reviewed. Results: More years of education and White race were significantly associated with having an advance directive. With the exceptions of comfort care and pain treatment, advance directives were used primarily to restrict, not request, many forms of care at the end of life. Decisions about care for end-stage conditions such as Alzheimers dementia are less often addressed in these documents than for terminal conditions and persistent vegetative state. Discussion: For advance directives to better reflect a persons wishes, discussions with individuals and families about advance directives should include a range of care issues in the settings of terminal illness, persistent vegetative state or end-stage illness. These documents should be reviewed periodically to make certain that they convey accurately the persons treatment preferences.

Prevalence and treatment of neuropsychiatric symptoms in advanced dementia.

Neuropsychiatric symptoms (NPS) are common in dementia, although little is known about their prevalence and treatment near the end of life. This study used a retrospective review of the medical records of 123 hospice-eligible nursing home residents with advanced dementia to investigate the prevalence of NPS and NPS-targeted pharmacological and non-pharmacological treatments. The most prevalent NPS were agitation or aggression (50.4%), depression (45.5%), and withdrawal/lethargy (43.1%). Of the 105 (85.4%) residents who exhibited one or more NPS, 90.5% were receiving at least one NPS-targeted treatment, yet 41.9% received no documented nonpharmacological NPS-targeted care. The majority of documented nonpharmacological care focused on safety and explanations or instructions given to residents. Given the high prevalence of comorbidities, associated risks for medication interactions or serious side effects, and potential low-risk benefits of psychobehavioral care, these findings raise concerns about how to best increase the provision and documentation of nonpharmacological care in advanced dementia.

Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures

PurposeTo identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development.MethodsCross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease-Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD’ QOL.ResultsSelf-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression.ConclusionsCorrelates of QOL in community-residing PWD depend on who rates the PWD’s QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.

Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs

BACKGROUND This study examines the relationship of unmet dementia-related care needs of community-dwelling persons, and their caregivers (CGs), to measures of caregiver burden. METHODS Cross-sectional baseline data were analyzed from participants in a dementia care coordination trial of community-residing persons with dementia (PWD) (n = 254) and their caregivers (n = 246). Participants were recruited from Northwest Baltimore, Maryland. The Zarit Burden Inventory (ZBI) was used to measure subjective caregiver burden. Objective burden was measured by estimating the total hours per week spent doing things for the PWD and/or how many hours CGs missed paid work in the prior month due to caregiving responsibilities. The Johns Hopkins Dementia Care Needs Assessment was used to identify unmet dementia-related care needs. Bivariate and multivariate linear regressions examined the relationship of unmet needs, demographic, clinical, or functional characteristics with caregiver burden measures. RESULTS In adjusted multivariable models, patient neuropsychiatric symptoms and caregiver unmet emotional needs explained 22% of the variance in ZBI scores. In adjusted multivariable models, caregiver need for respite, patient functional dependency, and caregiver unmet specialty medical needs explained 26% of the variance in the hours per week spent caregiving. PWDs level of functional dependency was the sole correlate of missed time at work, explaining 11% of the variance. CONCLUSIONS Addressing potentially modifiable unmet caregiver needs may reduce subjective and objective caregiver burden.