Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics.

OBJECTIVE: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. DESIGN: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. SETTING: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. PARTICIPANTS: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. MEASUREMENTS: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. RESULTS: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. CONCLUSIONS: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.

A Multipronged, Adaptive Approach for the Recruitment of Diverse Community-Residing Elders with Memory Impairment: The MIND at Home Experience.

OBJECTIVE: To provide a critical review of a multipronged recruitment approach used to identify, recruit, and enroll a diverse community-based sample of persons with memory disorders into an 18-month randomized, controlled dementia care coordination trial. METHODS: Descriptive analysis of a recruitment approach comprised five strategies: community liaison ("gatekeepers") method, letters sent from trusted community organizations, display and distribution of study materials in the community, research registries, and general community outreach and engagement activities. Participants were 55 community organizations and 63 staff of community organizations in Baltimore, Maryland. Participant referral sources, eligibility, enrollment status, demographics, and loss to follow-up were tracked in a relational access database. RESULTS: In total, 1,275 referrals were received and 303 socioeconomically, cognitively, and racially diverse community-dwelling persons with cognitive disorders were enrolled. Most referrals came from letters sent from community organizations directly to clients on the study's behalf (39%) and referrals from community liaison organizations (29%). African American/black enrollees were most likely to come from community liaison organizations. CONCLUSION: A multipronged, adaptive approach led to the successful recruitment of diverse community-residing elders with memory impairment for an intervention trial. Key factors for success included using a range of evidence-supported outreach strategies, forming key strategic community partnerships, seeking regular stakeholder input through all research phases, and obtaining "buy-in" from community stakeholders by aligning study objectives with perceived unmet community needs.

A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes.

OBJECTIVE: To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. METHODS: An 18-month randomized controlled trial of 289 community-living care recipient (CR)-caregiver (informal caregivers, i.e., unpaid individuals who regularly assisted the CR) dyads from 28 postal code areas of Baltimore, Maryland was conducted. All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by nonclinical community workers to address unmet care needs through individualized care planning, referral and linkage to dementia services, provision of caregiver dementia education and skill-building strategies, and care progress monitoring by an interdisciplinary team. Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. RESULTS: Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, with no statistically significant between-group difference. No significant group differences occurred in most caregiver burden measures, depression, or QOL. There was a potentially clinically relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with control subjects. CONCLUSION: No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. However, MIND at Home appeared to have had a modest and clinically meaningful impact on informal caregiver time spent with CRs.

A multidimensional home-based care coordination intervention for elders with memory disorders: the maximizing independence at home (MIND) pilot randomized trial.

OBJECTIVES: To assess whether a dementia care coordination intervention delays time to transition from home and reduces unmet needs in elders with memory disorders. DESIGN: 18-month randomized controlled trial of 303 community-living elders. SETTING: 28 postal code areas of Baltimore, MD. PARTICIPANTS: Age 70+ years, with a cognitive disorder, community-living, English-speaking, and having a study partner available. INTERVENTION: 18-month care coordination intervention to systematically identify and address dementia-related care needs through individualized care planning; referral and linkage to services; provision of dementia education and skill-building strategies; and care monitoring by an interdisciplinary team. MEASUREMENTS: Primary outcomes were time to transfer from home and total percent of unmet care needs at 18 months. RESULTS: Intervention participants had a significant delay in time to all-cause transition from home and the adjusted hazard of leaving the home was decreased by 37% (Hazard ratio: 0.63, 95% Confidence Interval: 0.42-0.94) compared with control participants. Although there was no significant group difference in reduction of total percent of unmet needs from baseline to 18 months, the intervention group had significant reductions in the proportion of unmet needs in safety and legal/advance care domains relative to controls. Intervention participants had a significant improvement in self-reported quality of life (QOL) relative to control participants. No group differences were found in proxy-rated QOL, neuropsychiatric symptoms, or depression. CONCLUSIONS: A home-based dementia care coordination intervention delivered by non-clinical community workers trained and overseen by geriatric clinicians led to delays in transition from home, reduced unmet needs, and improved self-reported QOL.

Researchers' perspectives on the role of study partners in dementia research.

BACKGROUND: Study partners for dementia research participants are vital to the research process, but little is known about their role, responsibilities, and experiences. Study partners are usually family members or friends - often the patient's informal caregiver - who are knowledgeable about and usually accompany the participant to study visits. This study examines researchers' perspectives on the role of study partners in dementia research. METHODS: Qualitative data collection and analytic methods were used. Semi-structured individual interviews with principal investigators, study coordinators, and research nurses (i.e. researchers; n = 17) at two academic research sites were recorded, transcribed, and content analyzed to identify themes in the data. RESULTS: According to researchers, study partners either make or help make research enrollment and post-enrollment decisions, serve as knowledgeable informants for the participants, manage the logistics that enable participants to comply with a study's protocol, and provide comfort and encouragement for the patient to engage in and complete a study. Researchers describe ideal qualities of study partners as being able to provide reliable information, being dependable and adherent to the protocol, and not expecting a benefit. They also report that study partners may face both practical and emotional challenges during research participation. However, researchers believe that study partners derive dementia-related education, caregiver support, and satisfaction from their involvement in research. CONCLUSIONS: Investigators, potential study partners, and institutional review boards should be aware of study partners' research responsibilities, challenges, and their interests as caregivers.

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. PWD's 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.

Decision making for participation in dementia research.

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 individuals with cognitive impairment (i.e., subjects) who were asked to join one of six dementia studies and 46 study partners or surrogate decision makers. MEASUREMENTS: Semistructured 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. Although 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.

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.

Predictors of progression to severe Alzheimer's disease in an incidence sample.

BACKGROUND: Little is known about factors influencing time to severe Alzheimer's disease (AD). METHODS: Incident cases of AD in the cache county memory study were identified. Severe AD was defined as mini-mental state examination score of ≤10 or Clinical Dementia Rating Scale score of 3; cases with either mini-mental state examination score of ≥16 or clinical dementia rating <2 were not categorized as severe AD. Kaplan-Meier, log-rank tests, and Cox analyses were used to identify demographic, clinical, and genetic correlates of time to progression to severe AD. RESULTS: Sixty-eight of 335 cases of incident AD developed severe dementia. In bivariate analyses, female gender, less than high school education, at least one clinically significant Neuropsychiatric Inventory domain at baseline, and the youngest and oldest ages exhibited shorter time to severe AD. In competing risk analysis, subjects with mild or at least one clinically significant neuropsychiatric inventory domain score, and subjects with worse health were more likely to progress to severe dementia or death. CONCLUSIONS: Demographic and clinical variables predict progression to severe AD. Further study should examine whether these relationships are causal or correlational.

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

PURPOSE: To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development. METHODS: Cross-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. RESULTS: Self-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. CONCLUSIONS: Correlates 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.

Race and cognitive decline among community-dwelling elders with mild cognitive impairment: findings from the Memory and Medical Care Study.

OBJECTIVE: Previous studies have reported conflicting findings on the relationship between race and cognitive decline in elders with dementia. Few studies have examined the role of race in cognitive decline in mild cognitive impairment (MCI). We investigate the relationship between race and cognitive decline in participants with MCI in a community-based, longitudinal study of cognitively impaired elders. METHOD: Based on a validated method utilizing a neuropsychiatric battery, 133 subjects [mean age: 78.7 years (SD = 6.5); female: 112 (76.7%); black: 59 (44.4%)] out of 512 participants in the Memory and Medical Care Study were diagnosed with MCI. The main outcome measure was the Telephone Interview for Cognitive Status (TICS) score over three years. Other baseline subject characteristics (demographics, health-related variables, behavioral, and psychiatric symptoms) were included in the analysis. RESULTS: Overall, the three-year decline in mean TICS score was significantly higher among African Americans than non-African Americans [3.31 (SD: 7.5) versus 0.96 (SD: 3.0), t-value = 1.96, p-value = 0.05]. General estimating equation analyses revealed that African American race was associated with a faster rate of cognitive decline in all models. CONCLUSION: The rate of cognitive decline in MCI appears to be faster in African Americans than non-African Americans in the community. Diagnosis of MCI among African American elders could lead to early interventions to prevent or delay cognitive decline in the future.

A Descriptive Study of Home Modifications for People with Dementia and Barriers to Implementation.

This study describes home environmental features, safety issues, and health-related modifications in a community dwelling sample of 82 elderly people with dementia. Main barriers to the accessibility of the homes were steps, both inside and outside the house. The majority of the caregivers had made home modifications, which pertained mainly to physical limitations. Home modifications to support cognitive deficits were made to a lesser extent. The main barrier to the implementation of home modifications to accommodate the care recipient's memory loss was skepticism about their usefulness. Regarding the removal of physical barriers, financial constraints were most frequently mentioned.

Seeking assent and respecting dissent in dementia research.

OBJECTIVES: Obtaining assent and respecting dissent are widely adopted safeguards when conducting dementia research involving individuals who lack consent capacity, but there is no consensus on how assent and dissent should be defined or what procedures should be used regarding them. Our objective was to provide recommendations on these issues based on the opinions of knowledgeable key informants. DESIGN: Cross-sectional qualitative research. SETTING: University research institutions. PARTICIPANTS: Forty informants, including 1) nationally known experts on dementia and research ethics, 2) dementia researchers, and 3) dementia caregivers and advocates. MEASUREMENTS: Semistructured individual and focus group interviews, audio recorded, and transcribed for content analysis. RESULTS: Assent and dissent should be defined broadly and based on an assessment of how adults who lack consent capacity can express or indicate their preferences verbally, behaviorally, or emotionally. Assent requires the ability to indicate a meaningful choice and at least a minimal level of understanding. Assent should be required whenever an individual has the ability to assent, and dissent should be binding if it is unequivocal or sustained after an effort to relieve concerns and/or distress. Standards for seeking assent and respecting dissent should not be linked to the risks or potential benefits of a study. Lacking the ability to assent and/or dissent should not automatically preclude research participation. CONCLUSIONS: Obtaining assent and respecting dissent from individuals who lack consent capacity for dementia research allows them to participate, to the extent possible, in the consent process. Assent and dissent are important independent ethical constructs.

Living alone with dementia: lack of awareness adds to functional and cognitive vulnerabilities.

BACKGROUND: Approximately 25% of individuals with dementia live alone, yet little is known about the cognitive and functional factors that impact detection of impairment. METHODS: Subjects with dementia (n = 349) from a community study of dementia management were administered the Mini-mental State Examination (MMSE) and were asked to rate their cognitive status. Each participant's knowledgeable informant (KI) was interviewed to provide information about the subject's mental health and levels of cognitive and functional impairment. Subjects with dementia living alone (n = 97, 27.8%) were compared to subjects living with others (n = 252, 72.2%) regarding functional impairment, psychiatric symptoms, cognitive functioning, and dementia recognition. RESULTS: While subjects with dementia living alone had significantly fewer ADL impairments (p < 0.0001) and less cognitive impairment (p < 0.0001) than subjects with dementia who were living with others, nearly half of subjects living alone had two or more IADL impairments. Both knowledgeable informants (p < 0.001) and primary care physicians (p < 0.009) were less likely to detect dementia in subjects living alone, while 77.3% of subjects with dementia living alone rated their cognitive abilities as "good" or "a little worse". Subjects with dementia living alone and those living with others had similar rates of psychosis (p = 0.2792) and depressive symptoms (p = 0.2076). CONCLUSIONS: Lack of awareness of cognitive impairment by individuals with dementia living alone as well as their knowledgeable informants and physicians, combined with frequent functional impairment and psychiatric symptoms, heightens risk for adverse outcomes. These findings underscore the need for increased targeted screening for dementia and functional impairment among older persons living alone.

Ethical issues in geriatric psychiatry.

The high rates of medical illness in older people, the high prevalence of cognitive disorder in the elderly, and the high prevalence of frailty in late life raise issues that occur infrequently in the care of younger adults. This article discusses the ethical issues that commonly arise in the setting of these medical and psychiatric morbidities, and emphasizes the need for clinicians and researchers to be knowledgeable about the belief systems and values of individual patients, of their carers when relevant, of themselves, and of research participants.

Evaluation of the validity and reliability of the Alzheimer Disease-related Quality of Life Assessment Instrument.

The Alzheimer Disease-related Quality of Life (ADRQL) instrument was developed to assess health-related quality of life in people with AD using assessments from family caregivers or professional staff. Validity and reliability of the ADRQL in its original form and a revised version are assessed in a sample consisting of persons in 3 residential settings (community, assisted living, nursing home). The ADRQL exhibits good item-internal consistency (67.5% of items met 0.40 standard); high correlation of items to hypothesized scales (85% of items met criteria for 4 of 5 subscales and the overall instrument); a good range of scores (21.6 to 100 for total sample revised instrument); very low missing data; and internal-consistency reliability coefficients exceeding the minimum reliability standard for group comparisons (0.86 for total scores; range of 0.56 to 0.83 for subscales). In a community sample, the ADRQL discriminates between groups and is responsive over time in hypothesized directions. Characteristics of caregiver raters (community sample) including demographics and self-rated health were largely unrelated to scores. The results support the use of the ADRQL to evaluate health-related quality of life in persons with AD across various care settings and various stages of the disease. Modest correlations with cognitive and functional disability levels suggest that the ADRQL provides insight into other important dimensions of life experience in persons with dementia. The revised version has improved measurement properties and is recommended for use over the original.

Surrogate decision makers' understanding of dementia patients' prior wishes for end-of-life care.

OBJECTIVE: This study examines how surrogate decision makers for dementia patients developed an understanding of patient preferences about end-of-life (EOL) care and patient wishes. METHODS: Semistructured interviews were conducted with 34 surrogate decision makers for hospice-eligible nursing home patients with dementia. The data were content analyzed. RESULTS: Most surrogates reported that patients had previously completed an advance directive (59%), discussed preferences for EOL care (56%), or done both (38%). Catalysts for and barriers to completing an advance directive or having EOL care discussions included factors that were both intrinsic and extrinsic to the patient. The most commonly reported wish for EOL care was to not be kept alive by "machines" or "extraordinary measures." DISCUSSION: Health care providers may be able to assist patients and families by normalizing discussions of dying, encouraging advance care planning, helping them identify goals for EOL care, and providing information to support treatment decisions consistent with patients' wishes.

Content of advance directives for individuals with advanced dementia.

OBJECTIVE: 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 Alzheimer's dementia are less often addressed in these documents than for terminal conditions and persistent vegetative state. DISCUSSION: For advance directives to better reflect a person's 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 person's treatment preferences.

Deciding in the best interest of clients with dementia: the experience of public guardians.

We conducted an in-depth interview study of public guardians in three local jurisdictions in the state of Maryland to explore the decision-making process utilized by court-appointed public guardians making medical and EOL care decisions on behalf of their clients with dementia. Overall, public guardians appeared to make their decisions in the context of relevant ethical principles and relevant case law and state statute, and the basis upon which they made informed decisions was dependent on their training and experience. The stated goal of public guardians is to make decisions that they believe are in the best interest of their clients. In the case of a healthcare decision, their goal is to maximize quality of life; and in the case of an EOL care decision, their goal is to minimize pain and suffering. In general, public guardians gathered information in order to identify previous preferences of their now-incapacitated clients, so that they could develop a preference profile to assist both an initial decision on whether an individual ought to have a court-appointed public guardian, and with healthcare and EOL decisions once an appointment was made. When guardians were unable to develop a preference profile for a particular client, they relied on past decisions in similar situations. Healthcare and EOL decisions were most often triggered by a recommendation by the client's healthcare provider. Once a decision-point was identified, the public guardian considered the risks and benefits of the proposed intervention in light of the client's current condition. At times the guardians reviewed informational resources such as textbooks and the Internet. In addition, most guardians sought advice from a medical consultant who is available to all public guardians in Maryland. Some guardians sought the advice of this medical consultant only when faced with more complex decisions. Guardians challenged physicians' recommendations when they believed the physicians were recommending an intervention that was not in the best interest of the client--that is, they advocated against either overtreatment or undertreatment. Ultimately, guardians took particularly difficult issues to the court and obtained a judge's opinion.

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.