Burden and quality of life of family caregivers of Alzheimer's disease patients: the role of forgiveness as a coping strategy.

OBJECTIVES: This study aimed to evaluate the variables that  were associated, contributed and moderated quality of life (QoL) and burden in family caregivers. METHODS: A total of 130 participants were evaluated using the following instruments: Depression, Anxiety and Distress Scale; Index of Family Relations; Heartland Forgiveness Scale; Burden Interview Scale; Short Form Health Survey. RESULTS: Being a younger caregiver, less distress, better family relationships and greater use of forgiveness were associated with more QoL. Also, family caregivers who chosethe caregiving role, less distress, better family relationships and greater use of forgiveness showed lower levels of burden. Age, distress and forgiveness contributed to QoL. In turn, the choice to become a family caregiver, distress, and forgiveness contributed to burden. Forgiveness played a moderating role in the relationship between family relationships and burden. CONCLUSION: Based on the results, there is a need to intervene in older family caregivers, particularly those who did not choose to become a caregiver, who report greater distress, have worse family relationships, and display less use of forgiveness, in order to decrease their burden and promote QoL.

Primary care patterns among dual eligibles with Alzheimer's disease and related dementias.

BACKGROUND: Primary care is essential for persons with Alzheimer's disease and related dementias (ADRD). Prior research suggests that the propensity to provide high-quality, continuous primary care varies by provider setting, but the settings used by Medicare-Medicaid dual-eligibles with ADRD have not been described at the population level. METHODS: Using 2012-2018 Medicare data, we identified dual-eligibles with ADRD. For each person-year, we identified primary care visits occurring in six settings. We calculated descriptive statistics for beneficiaries with a majority of visits in each setting, and conducted a k-means cluster analysis to determine utilization patterns, using the standardized count of primary care visits in each setting. RESULTS: Each year from 2012 to 2018, at least 45.6% of dual-eligibles with ADRD received a majority of their primary care in nursing facilities, while at least 25.2% did so in physician offices. Over time, the share relying on nursing facilities for primary care decreased by 5.2 percentage points, offset by growth in Federally Qualified Health Centers (FQHCs) and miscellaneous settings (2.3 percentage points each). Dual-eligibles relying on nursing facilities had more annual primary care visits (16.1) than those relying on other settings (range: 6.8-10.7 visits). Interpersonal care continuity was also higher in nursing facilities (97.0%) and physician offices (87.9%) than in FQHCs (54.2%), rural health clinics (RHCs, 46.6%), or hospital-based clinics (56.8%). Among dual-eligibles without care continuity, 82.7% were assigned to a cluster with few primary care visits. CONCLUSIONS: A trend toward care in different settings likely reflects improved access to patient-centered primary care. Low rates of interpersonal care continuity in FQHCs, RHCs, and physician offices may warrant concern, unless providers in these settings function as a care team. Nonetheless, every healthcare system encounter presents an opportunity to designate a primary care provider for dual-eligibles with ADRD who use little or no primary care.

Nursing home admissions for persons with dementia: Role of home- and community-based services.

OBJECTIVE: To examine the relationship between Medicaid home- and community-based services (HCBS) generosity and the likelihood of nursing home (NH) admission for dually enrolled older adults with Alzheimer's disease and related dementias (ADRD) and their level of physical and cognitive impairment at NH admission. DATA SOURCES: National Medicare data, Medicaid Analytic eXtract, and MDS 3.0 for CY2010-2013 were linked. STUDY DESIGN: Eligible Medicare-Medicaid dual beneficiaries with ADRD were identified and followed for up to a year. We constructed two measures of HCBS generosity, breadth and intensity, at the county level for older duals with ADRD. Three binary outcomes were defined as follows: any NH placement during the follow-up year for all individuals in the sample, high (vs. not high) physical impairment, and high (vs. not high) cognitive impairment at the time of NH admission for those who were admitted to an NH. Logistic regressions with state-fixed effects and county random effects were estimated for these outcomes, respectively, accounting for individual- and county-level covariates. DATA EXTRACTION METHODS: The study sample included 365,310 community-dwelling older dual beneficiaries with ADRD who were enrolled in fee-for-service Medicare and Medicaid between October 1, 2010, and December 31, 2012. PRINCIPAL FINDINGS: Considerable variations of breadth and intensity in county-level HCBS were observed. We found that a 10-percentage-point increase in HCBS breadth was associated with a 1.4 (p < 0.01)-percentage-point reduction in the likelihood of NH admission. Among individuals with NH admission, greater HCBS breadth was associated with a higher level of physical impairment, and greater HCBS intensity was associated with a higher level of physical and cognitive impairment at NH admission. CONCLUSIONS: Among community-dwelling duals with ADRD, Medicaid HCBS generosity was associated with a lower likelihood of NH admission and greater functional impairment at NH admission.

Community-Engaged Research with Vietnamese Americans to Pilot-Test a Dementia Caregiver Intervention.

Caring for a family member with Alzheimer's disease (AD) or a related dementia is stressful, and this may especially be the case for racial/ethnic minority caregivers. This study examined the feasibility and acceptability of a pilot intervention for Vietnamese American dementia caregivers. A secondary, exploratory aim was to examine post-intervention effects on AD knowledge and psychosocial outcomes. Of the 87 individuals contacted, 32 met inclusion criteria. Of this number, 14 enrolled in the study with 11 caregivers completing the intervention, and 10 of the 11 completing 3-month follow-up data. Caregivers provided positive feedback on the intervention and had higher scores on AD knowledge and self-efficacy in seeking support services post-intervention, with the effect on self-efficacy maintained at 3-month follow-up. Recruitment for the intervention was difficult; however, once caregivers came to the first session, they were engaged and found the classes informative. Recommendations for a future intervention are discussed.

Factors associated with health-related quality of life among family caregivers of people with Alzheimer's disease.

AIM: Based on the ageing population and the inadequate healthcare system in China, the majority of care for patients with Alzheimer's disease (AD) is provided by family caregivers. Caregivers suffer a long-term heavy care burden and pressure, which affects their physical and mental health. The present study aims at investigating health-related quality of life (HRQOL) among family caregivers of AD patients and exploring its influencing factors. METHODS: This study included 206 family caregivers (76 male, 130 female) of AD patients recruited from one Tier 3 hospital, one psychiatric hospital, two gerocomiums and three communities in Ganzhou city, Jiangxi Province, China. Measures included the World Health Organization (WHO) Quality of Life (WHO/ QOL-BREF) questionnaire, Zarit burden of care scale (ZBI), and social support rating scale (SSRS).We performed face-to-face or telephone interviews with patients and caregivers. The association between possible factors and changes in HRQOL was examined through stepwise multiple regression analysis. RESULTS: The majority of family caregivers felt moderate to severe level of burden. The average HRQOL score was 54.24 ± 10.36. The mean SSRS score was 30.4 ± 10.9. The average ZBI score was 41.2 ± 12.8. The HRQOL of family caregivers of AD patients was negatively correlated with the neuropsychiatric questionnaire score, ZBI score, and chronic diseases of caregivers (P < 0.05), and positively correlated with the SSRS score (P < 0.05). CONCLUSION: Reduced QOL was highly prevalent among AD patient family caregivers, and the level of burden, neuropsychiatric symptoms of patients, social support, and chronic diseases of caregivers were factors associated with HRQOL, and the effect of care burden is greatest. Interventions aimed at reducing the level of burden should focus not only on the patient but also on the caregiver.

Anxiety and Depression Are Not Related to Increasing Levels of Burden and Stress in Caregivers of Patients With Alzheimer's Disease.

Sixty-nine dyads of patients with Alzheimer's disease and primary caregivers have been followed up for 1 year to evaluate cognitive (Mini-Mental State Examination), functional (Instrumental Activities of Daily Living), and behavioral (Neuropsychiatric Inventory) decline of patient in relation to burden (Caregiver Burden Inventory), stress (Relative Stress Scale), anxiety (State-Trait Anxiety Inventory Y), and depression (Beck Depression Inventory) reported by the caregivers. After 1 year of observation, cognitive and functional scores worsened while behavioral problems remained unchanged and relatively mild in patients. After 1 year, caregivers' scores of scales of anxiety and depression decreased significantly, while stress scores remained unchanged and burden slightly increased. In our opinion, the unexpected improvement in psychological situation of caregivers may be mainly due to educational interventions focused on knowledge of the disease with a particular attention directed toward emotional support and individual needs.

Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers.

OBJECTIVE: We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD). METHODS: Participants were recruited through an agreement with the Rush Alzheimer's Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants' perceptions of family caregiving. Direct content analysis was performed. RESULTS: Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future. CONCLUSIONS: The influence of gender roles seemed to play a role in caregivers' perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving.

Alzheimer e os desafios dos cuidados de enfermagem ao idoso e ao seu cuidador familiar / Alzheimer's disease and the challenges of nursing care towards elderly people and their family caregivers / Alzheimer y los desafíos de los cuidados de enfermería al anciano ya su cuidador familiar

Objective: This study meant to analyze the main challenges and the care provided by nursing teams during the process of caring for elderly people bearing Alzheimer's disease and their family caregivers. Methods: It is an integrative literature review that was performed through article searching in the Scientific Electronic Library Online (SciELO) and the Literatura Latino-americana e do Caribe em Ciências da Saúde (LILACS) [Latin-American and Caribbean Literature in Health Sciences]. There were obtained 783 studies, of which only 13 met the inclusion criteria. Results: Care strategies associated to Alzheimer-related forms of behavior were proposed, namely, forgetfulness, denial of bathing, and the acceptance of the disease by the family. The lack of training and knowledge by some nursing professionals was evidenced as a challenging element vis-à-vis the relationship with elderly people and their family caregivers. Conclusion: It is important that public policies pursue to guarantee caring practices for elderly people bearing Alzheimer's disease, approaching the real needs experienced by such population, as well as family caregivers and health professionals

Objetivo: Analisar os principais desafios e cuidados despendidos pela equipe de enfermagem durante o processo do cuidar de idosos que vivem com Alzheimer e ao seu cuidador familiar. Métodos: Trata-se de uma Revisão Integrativa desenvolvida a partir da busca de artigos nas bases Scientific Eletronic Library Online e Literatura Latino-Americana em Ciências da Saúde. Obtiveram-se 783 estudos, dos quais apenas 13 atendiam aos critérios de inclusão. Resultados: Foram propostas estratégias de cuidados referentes a formas de agir relacionadas ao Alzheimer. Entre elas o esquecimento, negação do banho, aceitação da doença pela família. A falta de capacitação e conhecimento por parte de alguns profissionais da enfermagem foram evidenciados como elemento dificultador na relação com o idoso e seu familiar cuidador. Conclusão: É importante que as políticas públicas possam garantir a assistência ao idoso com Alzheimer, aproximando-se das reais necessidades vivenciadas pelos idosos, cuidadores familiares e profissionais da saúde

Objetivo: Analizar los principales desafíos y cuidados que el equipo de enfermería durante el proceso de cuidar a los ancianos que viven con Alzheimer y su cuidador familiar. Métodos: Se trata de una Revisión Integrativa desarrollada a partir de la búsqueda de artículos en las bases Scientific Eletronic Library Online y Literatura Latinoamericana en Ciencias de la Salud. Se obtuvieron 783 estudios, de los cuales sólo atendían a los criterios de inclusión. Resultados: Se han propuesto estrategias de atención a las formas de actuar relacionadas con el Alzheimer, entre ellas el olvido, la negación del baño, la aceptación de la enfermedad por parte de la familia. La falta de capacitación y conocimiento por parte de algunos profesionales de la enfermería fueron evidenciados como elemento dificultador en la relación con el anciano y su familiar cuidador. Conclusión: Es importante que las políticas públicas puedan garantizar la asistencia al anciano con Alzheimer, aproximándose a las reales necesidades vivenciadas por los ancianos, cuidadores familiares y profesionales de la salud

Serious Illness and End-of-Life Treatments for Nurses Compared with the General Population.

OBJECTIVES: As key team members caring for people with advanced illness, nurses teach patients and families about managing their illnesses and help them to understand their options. Our objective was to determine if nurses' personal healthcare experience with serious illness and end-of-life (EOL) care differs from the general population as was shown for physicians. DESIGN: Observational propensity-matched cohort study. SETTING: Fee-for-service Medicare. PARTICIPANTS: Nurses' Health Study (NHS) and a random 20% national sample of Medicare beneficiaries aged 66 years or older with Alzheimer's disease and related dementias (ADRD) or congestive heart failure (CHF) diagnosed in the hospital. MEASUREMENTS: Characteristics of care during the first year after diagnosis and the last 6 months of life (EOL). RESULTS: Among 57 660 NHS participants, 7380 had ADRD and 5375 had CHF; 3227 ADRD patients and 2899 CHF patients subsequently died. Care patterns in the first year were similar for NHS participants and the matched national sample: hospitalization rates, emergency visits, and preventable hospitalizations were no different in either disease. Ambulatory visits were slightly higher for NHS participants than the national sample with ADRD (13.1 vs 12.5 visits; P < .01) and with CHF (13.7 vs 12.5; P < .001). Decedents in the NHS and national sample had similar acute care use (hospitalization and emergency visits) in both diseases, but those with ADRD were less likely to use life-prolonging treatments such as mechanical ventilation (10.9% vs 13.5%; P = .001), less likely to die in a hospital with a stay in the intensive care unit (10.4% vs 12.1%; P = .03), and more likely to use hospice (58.9% vs 54.8%; P < .001). CHF at the EOL results were similar. CONCLUSIONS: Nurses with newly identified serious illness experience similar care as the general Medicare population. However, at EOL, nurses are more likely to choose less aggressive treatments than the patients for whom they care. J Am Geriatr Soc 67:1582-1589, 2019.

Long-Term Outcomes of the Benefit-Finding Group Intervention for Alzheimer Family Caregivers: A Cluster-Randomized Double-Blind Controlled Trial.

OBJECTIVES: To examine the effects of the group benefit-finding therapeutic intervention (BFT) for Alzheimer family caregivers up to 10-month follow-up. METHODS: This was a cluster-randomized double-blind controlled trial in social centers and clinics. Participants included 129 caregivers. Inclusion criteria were 1) primary caregiver aged 18 years and older and without cognitive impairment, 2) providing 14 or more care hours per week to a relative with mild-to-moderate Alzheimer disease, and 3) scoring 3 or more on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having parkinsonism or other forms of dementia. BFT (using cognitive reappraisal to find positive meanings) was evaluated against two forms of psychoeducation as controls-standard and simplified (lectures only) psychoeducation. All interventions had eight weekly sessions of 2 hours each. Primary outcome was depressive symptoms, whereas secondary outcomes were global burden, role overload, and psychological well-being. Measures were collected at baseline, postintervention, and 4- and 10-month follow-up. RESULTS: Mixed-effects regression showed that BFT's effect on depressive symptoms conformed to a curvilinear pattern, in which the strong initial effect leveled out after postintervention and was maintained up to 10-month follow-up; this was true when compared against either control group. The effect on global burden was less impressive but moderate effect sizes were found at the two follow-ups. For psychological well-being, there was an increase in the BFT group at 4-month follow-up and a return to baseline afterward. No effect on role overload was found. CONCLUSION: Benefit-finding reduces depressive symptoms as well as global burden in the long-term and increases psychological well-being in the medium-term.

Overcoming a Bad Day: a Qualitative Look into the Dementia Caregiving Experiences of Mexican-Origin Women in East Los Angeles.

The number of Latinos with Alzheimer's disease (AD) is projected to more than double by 2030. Yet, the current literature is lagging on Alzheimer's caregiving among Latinos. This study explores how Mexican origin women experience dementia caregiving, and the coping strategies they use to manage their caregiving situations. Nine women were identified as caregivers of a family member with AD or dementia from a larger study on caregiving. Interviews with them were collected and subsequently analyzed using a modified grounded theory approach to reduce the data to identify thematic content. All but one participant described caregiving as "tiring," "wearing," or "hard." They reported suffering from stress, insomnia, nervousness, migraines, and/or depression because of their caregiving experiences. Participants engaged in various coping strategies to help combat the perceived negative consequences of their caregiving experiences. The most commonly reported strategies were various forms of distraction, and meditation or prayer. The Mexican origin women in this study experience faced two types of interpersonal challenges related to dementia caregiving: changes in the care receiver's personality and behaviors, and physical care needs. They engaged in various coping to strategies to address the difficulties of their situation. This study provides formative research for identifying research questions and topics of examination in the future.

Association between sleep disturbance in Alzheimer's disease patients and burden on and health status of their caregivers.

BACKGROUND: Sleep disturbance in Alzheimer's disease (AD) patients may have a negative impact not only on patients themselves but also on the physical and mental health of their caregivers. Detailed analysis of these issues is lacking. OBJECTIVE: This study investigated the association between sleep disturbance in AD patients and the burden on, and health status of, their caregivers in Japan. METHODS: We conducted a cross-sectional web-based questionnaire survey among caregivers of AD patients with insomnia symptoms in Japan. Demographic data and Sleep Disorders Inventory (SDI) scores for patients, caregiver burden (Burden Index of Caregivers-11 [BIC-11]) and health status, including Pittsburgh Sleep Quality Index, Patient Health Questionnaire-9, and 12-Item Short Form Health Survey v2, were collected. Multivariate analysis was used to examine the association between the burden and health status of caregivers and sleep disturbance in their care recipients with AD. RESULTS: A total of 496 caregivers of AD patients with insomnia symptoms were examined in this study. We found that the BIC-11 total score increased as the SDI score increased, indicating a significant positive association, even after adjusting for confounding factors. We also found an association between sleep disturbances of AD patients and health of caregivers (sleep quality, depression, and physical/mental quality of life). CONCLUSION: This study demonstrated that sleep disturbance in AD patients was associated with an increased burden and poorer health status of caregivers. Our findings highlight the importance of sleep management in AD patients.

Caregiver Burden and Desire for Institutional Placement-The Roles of Positive Aspects of Caregiving and Religious Coping.

Based on stress coping theory, this study investigated whether and how positive aspects of caregiving (PAC) and religiosity buffered the association between caregiving burden and desire to institutionalize (DTI). Secondary data (N = 637) were drawn from the baseline assessment of the Resources for Enhancing Alzheimer's Caregiver Health II project. Descriptive analysis, bivariate correlation, and multiple linear regressions were conducted. The results indicated that higher levels of caregiver burden, daily care bother, and Revised Memory and Behavioral Problem Checklist bother were all significantly associated with higher level of DTI. Both PAC and religious coping were negatively associated with DTI; however, only PAC was significant. Only the interaction between daily care bother and religious coping was significant, which indicated that the harmful effect of daily care bother on DTI was significantly buffered among those who have religiosity. Study findings have important implications for policy makers and for providers who serve dementia family caregivers.

Caregiver burden and family functioning in different neurological diseases.

Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer's Disease and other dementia (AD), Parkinson's Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations.

Nursing Home Chain Affiliation and Its Impact on Specialty Service Designation for Alzheimer Disease.

Specialty care units (SCUs) in nursing homes (NHs) grew in popularity during the 1990s to attract residents while national policies and treatment paradigms changed. Alzheimer disease has consistently been the dominant form of SCU. This study explored the extent to which chain affiliation, which is common among NHs, affected SCU bed designation. Using data from the Online Survey Certification and Reporting (OSCAR) from 1996 through 2010 with 207 431 NH-year observations, we described trends and compared chain-affiliated NHs with independent NHs. Designation of beds for Alzheimer disease SCUs grew from 1996 to 2003 and then declined. At the peak, 19.6% of all NHs had at least one Alzheimer disease SCU bed. In general, chain affiliation promoted Alzheimer disease SCU bed designation across time, chain size, and NH profit status. During the period of largest growth from 1996 to 2003, the likelihood of designation of Alzheimer disease SCU beds was 1.55 percentage points higher among for-profit NHs affiliated with large chains than independent for-profit NHs ( P < .001) and remained 1.28 percentage points higher from 2004 to 2010. However, chain-affiliated NHs generally had a lower percentage of residents with dementia than independent NHs. For example, although for-profit NHs affiliated with large chains had more Alzheimer disease SCU beds, they had nearly 3% fewer residents with dementia than independent NHs ( P < .001). We conclude that organizational decisions to designate beds for Alzheimer disease SCUs may be related to marketing strategies to attract residents since adoption of Alzheimer disease SCUs has fluctuated over time, but did not appear driven by demand.

[Nursing home placement of people with dementia: a secondary analysis of qualitative data and literature review on perspectives of informal caregivers and healthcare professionals]. / Umzug von Menschen mit Demenz in ein Pflegeheim.

Background: Nursing home placement of people with dementia can become necessary when informal care is no longer sufficient. Informal carers experience the transition period as an additional burden. Aim: Experiences and views of informal carers and healthcare professionals regarding the transition from people with dementia to a nursing home are investigated to improve the support for informal carers. Method: This secondary analysis included data from all five focus groups with n = 30 informal carers and healthcare professionals conducted as part of the "RightTimePlaceCare" project. To supplement the material which resulted from a single interview question, a literature analysis with the same focus was conducted. Results: The merged results indicated that informal carers needed professional support early on at home until after the nursing home placement. Concerns regarding nursing homes, financial aspects and family related issues were important aspects in the decision making. Healthcare professionals recommended provision of early guidance regarding those matters and making own experiences with nursing homes. Healthcare professionals should serve as mediators during the transition process and improve the collaboration between service providers. Conclusions: Empowering families to make informed choices could be facilitated by offering advice at home about their options for formal support services, financial support, and housing solutions. Healthcare professionals should support caregivers to make a decision, coordinate the placement and to cope with the new situation.