Alzheimer's Family Caregivers Research Articles

Estimation of non-monotonic transition rates inasemi-Markov process with covariates adjustments andapplication to caregivers' stress data.

With the large ongoing number of aged people and Alzheimer's disease (AD) patients worldwide, unpaid caregivers have become the primary sources of their daily caregiving. Alzheimer's family caregivers often suffer from physical and mental morbidities owing to various reasons. The aims of this paper were to develop alternate methods to understand the transition properties, the dynamic change, and the long-run behavior of AD caregivers' stress levels, by assuming their transition to the next level only depends on the duration of the current stress level. In this paper, we modeled the transition rates in the semi-Markov Process with log-logistic hazard functions. We assumed the transition rates were non-monotonic over time and the scale of transition rates depended on covariates. We also extended the uniform accelerated expansion to calculate the long-run probability distribution of stress levels while adjusting for multiple covariates. The proposed methods were evaluated through an empirical study. The application results showed that all the transition rates of caregivers' stress levels were right skewed. Care recipients' baseline age was significantly associated with the transitions. The long-run probability of severe state was slightly higher, implying a prolonged recovery time for severe stress patients.

Association between perceived social support and physical activity level of alzheimer family caregivers

AbstractBackgroundFamily caregiving in Alzheimer’s Disease (AD) has been associated with a variety of negative psychological and social processes, including social isolation. Besides, it has been shown that the caregiver’s physical activity level is one of the factors associated with the burden of care. The negative impact of physical inactivity on general health status is well established. This study aimed was investigate relationship between social support and caregiver’s physical acitivity level.MethodsParticipants’ working‐caregiving status and functional independency of their patients was recorded. Physical activity level was assessed with Rapid Physical Activity Assessment (RAPA). Percieved Social Support Questionnary (PSSQ) was used for evaluating of social support. Statistical analysis was performed by Spearman correlation analysis in SPSS 22.0 package program.ResultsAmong the 59 participants 88.4% were female and mean age was 54.83±11.9 years. Caregiver’s demographics presented in Table 1. There was a significant correlation was found between RAPA and PPSQ (p = .015, rho = .321). According to RAPA results, 6.7% respondents were reported have no physical activity, 66.7% were underactive, and 13% were active.ConclusionsOur study was demonstrated that most of the caregivers were physically underactive. Supportive social environment was found related with caregivers physical activity level. It is necessary to be aware of the potential health risks not only for people with AD but also for caregivers. Caregivers should be encouraged to be physically active considering the positive effects on physical and mental health. Policy makers should develop strategies that support caregivers, taking into account all the components that are affect them physically, socially and psychologically.

Self-efficacy in controlling upsetting thoughts, but not positive gains, mediates the effects of benefit-finding group intervention for Alzheimer family caregivers.

This study aimed to examine the therapeutic mechanism of the benefit-finding therapeutic (BFT) intervention that used cognitive reappraisal and alternative thinking to construct positive aspects of caregiving (PAC), in a cluster-randomized controlled trial for Alzheimer caregivers. Forty two caregivers received BFT, whereas 87 received psychoeducation as control. Depressive symptoms and global burden were outcomes measured at baseline, postintervention, and 4- and 10-month follow-up. Mediators considered included PAC (measured by benefit word count to a qualitative measure) and three self-efficacies-controlling upsetting thoughts (SE-CUT), responding to disruptive behaviors, and obtaining respite. Using mixed-effects regression, we demonstrated that benefit-finding increased caregivers' PAC and SE-CUT, but that only SE-CUT uniquely predicted depressive symptoms and global burden longitudinally. Path analyses with bootstrapped confidence intervals, using full information maximum likelihood estimation to retain the whole sample with partial missing data, showed that SE-CUT change from baseline to postintervention mediated intervention effects on depressive symptoms, but not global burden, at both follow-ups. No mediation effects were found for PAC and the other self-efficacies. The BFT effect on depressive symptoms was partly accounted for by improvement in SE-CUT. The therapeutic mechanism for the effect on burden remained unknown. The study sheds light on the importance of actively promoting positive caregiver functioning. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Supplemental Material for Self-Efficacy in Controlling Upsetting Thoughts, but Not Positive Gains, Mediates the Effects of Benefit-Finding Group Intervention for Alzheimer Family Caregivers

Supplemental Material for Self-Efficacy in Controlling Upsetting Thoughts, but Not Positive Gains, Mediates the Effects of Benefit-Finding Group Intervention for Alzheimer Family Caregivers

Relationship between Knowledge, Attitude, and Burden among Alzheimer's Family Care Givers in Jeddah, Saudi Arabia

Background: According to Alzheimer's disease association. The prevalence of Alzheimer's patients will increase to reach 68% worldwide by 2050. More specifically according to Saudi Alzheimer's Association, the number of Alzheimer's patients was reported to be 130 thousand in Saudi Arabia. Therefore, this study looked at assessing the knowledge, attitudes, and level of burden among family care givers having Alzheimer patients. Methodology: A descriptive cross sectional correlational survey design was used to include 150 family care givers from Geriatric Society Association located in Almontazahat District, Jeddah, K.S.A. Three validated tools were used to assess the knowledge, attitudes and burden related to Alzheimer's disease namely: Alzheimer's disease Knowledge Scale, The Dementia Attitudes Scale, and Burden Scale for Family Caregivers. Findings: The majority (88.6 %) of the respondents were female, their mean age was (29.2 ± 12.5), and 55.6% had Bachelor level of education. Nearly three Quarter (72.5 %) of the respondents have moderate level (16-24 out of 30) of total knowledge of Alzheimer's scale. Surprisingly, 78.5% of the respondents had a negative attitude, and 81.9% felt burden towards their Alzheimer's patients. Unexpectedly, a negative correlation was reported between participant's knowledge and their attitude at p ≥ 0.5 while, a positive correlation was conveyed between respondents' knowledge and family burden scale at p ≥ 0.5. Conclusion and implications: It's concluded that, the level of knowledge among study participants was moderate while their attitude was negative and felt burden toward having Alzheimer's patients. Therefore, it's recommended to conduct psychosocial interventions to improve family caregiver attitudes and reduce their burden toward their beloved Alzheimer' patients. Comprehensive management of the Alzheimer patients includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.

Abstract IA07: Biobanking and genomic research: Understanding and acceptance of individuals unrepresented in clinical trials

Abstract Disparities exists in recruitment in clinical trials and biorepositories among minority groups, rural residents, and low-income individuals. The objective of this study to identify barriers and facilitators to awareness, understanding, and acceptance of clinical trials and biobanking among English- and Spanish-speaking safety-net patients and providers and African American (AA) and Hispanic social and church groups. We conducted 14 focus groups and 7 individual interviews January-May 2017 among English-speaking adults in urban and rural communities in Louisiana. In September 2018 we expanded the study to Hispanic adults. (This study is ongoing.) Sites included safety-net oncology and primary care clinics, social service agencies, Alzheimer support groups, and social and church groups. Themes were identified. The first study included 103 individuals: 78 patient and community participants and 25 providers; 24% lived in rural areas. Patients and community members' age ranged from 45-88; 85% were female, 78% AA. Participants were aware of clinical trials and personalized medicine due to ads on TV. Low-income and minority patients were open to participating in genomic trials and biobanking even if it would not benefit them directly. Cancer patients and Alzheimer family caregivers were highly interested in clinical trials that might benefit them or their family. Community participants were less trusting of clinical trials than patients. All said information about clinical trials would be most effective and actionable if it comes from a trusted physician. Terms such as clinical trials and biobanking were scary to some and not understood—medical studies and a bank to store blood and tissue were clearer. AA participants indicated that a recruitment message needs to be “ALL people are needed for studies to improve treatments” rather than “AA have been under-represented and most treatments based on whites,” which raises suspicion. Some participants were concerned with who would see data and if it would be a barrier to jobs or insurance, despite being told of protections in place for confidentiality. Community providers were interested in being more involved in clinical trials. They lacked time to identify trials and explain them to patients. They wanted brief, plain-language handouts with talking points and a card to give patients to call for more information. Transportation to academic centers is a barrier to patient participation in clinical trials. Very few patients, caregivers, or providers had looked for clinical trials on the Internet or social media. AA and lower-income white adults were interested in clinical trials but not clear how to learn about them. Most were willing to participate but had never been asked. Recommendation to participate in a clinical trial is most effective coming from a trusted physician; however, community physicians lack appropriate information to give patients. Strategies to create understandable and actionable information that can be shared with community providers and the public are urgently needed. Citation Format: Terry C. Davis, Connie Arnold, Glenn Mills, Lucio Miele. Biobanking and genomic research: Understanding and acceptance of individuals unrepresented in clinical trials [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr IA07.

Benefit-Finding Intervention Delivered Individually to Alzheimer Family Caregivers: Longer-Term Outcomes of a Randomized Double-Blind Controlled Trial.

To examine the longer-term effects of benefit-finding on caregivers' depressive symptoms (primary outcome), and global burden, role overload, psychological well-being, and positive aspects of caregiving (secondary outcomes). Ninety-six Hong Kong Chinese caregivers of relatives with Alzheimer's disease were randomly assigned to receive the benefit-finding intervention (BFT) or one of the two control conditions, namely, simplified psychoeducation (lectures only; SIM-PE) or standard psychoeducation (STD-PE). Caregivers received four biweekly one-to-one interventions of 3 hours each at their own homes. We focused on outcomes measured at 4- and 10-month follow-ups. The trajectories of intervention effects were modeled by BFT × time and BFT × time2 interaction terms. Mixed-effects regression showed significant BFT × time2 interaction effects on depressive symptoms against both control conditions, suggesting diminishing BFT effects over time. Z tests showed that, compared with controls, BFT participants reported substantial reductions in depressive symptoms at 4-month follow-up (d = -0.85 and -0.75 vs. SIM-PE and STD-PE, respectively). For depressive symptoms measured at 10-month follow-up, BFT was indistinguishable from STD-PE, whereas a moderate effect was observed in comparison with SIM-PE (d = -0.52). Moreover, positive aspects of caregiving, but not other secondary outcomes, continued to show intervention effect up to 10-month follow-up. Benefit-finding is an efficacious intervention for depressive symptoms in Alzheimer caregivers, with strong effects in the medium-term post-intervention and possible moderate effects in the longer-term post-intervention.

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

To examine the effects of the group benefit-finding therapeutic intervention (BFT) for Alzheimer family caregivers up to 10-month follow-up. 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. 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. Benefit-finding reduces depressive symptoms as well as global burden in the long-term and increases psychological well-being in the medium-term.

Abstract 3010: Biobanking and genomic research: Understanding and acceptance of safety-net patients, primary care providers and minority groups

Abstract Background: Disparities exists in recruitment in clinical trials and biorepositories among minority groups, rural residents and individuals with low SES.Objective. Identify barriers and facilitators to awareness, understanding and acceptance of clinical trials and biobanking among safety-net patients and providers and support group participants and African American (AA) social and church groups. Methods: We conducted 14 focus groups and 7 individual interviews January - May 2017 in urban and rural communities in Louisiana. Sites included safety-net oncology and primary care clinics, social service agencies, social and faith based groups. Themes were identified. Results: 103 individuals participated: 78 clinic patient and community participants, 25 providers; 24% participants lived in rural areas. Patients and community members ranged in age from 45-88; 85% were female, 78% AA. Participants had an increasing awareness of clinical trials and personalized medicine due to ads on TV. Low income and minority patients were open to participating in genomic trials and biobanking even if it would not benefit them directly. Cancer patients and Alzheimer family caregivers were highly interested in clinical trials that might benefit them or their family. Community participants were less trusting of clinical trials than patients. All said information and recommendations about clinical trials would be most effective and actionable if it comes from a trusted physician. Terms such as clinical trials and biobanking were scary to some and not understood - medical studies and a bank to store blood and tissue were clearer. African American participants indicated that a recruitment message needs to be “ALL people are needed for studies to improve treatments” rather than “AA have been underrepresented and most treatments based on whites” which raises suspicion. Some participants were concerned with who would see data and if it would be a barrier to jobs or insurance - despite being told of protections in place for confidentiality. Rural and urban providers (n=25) were interested in being more involved in clinical trials. They lacked time to identify trials and explain them to patients. They wanted brief, plain language handouts with talking points and a card to give patients to call for more information. Transportation to academic centers is a barrier to patient participation in clinical trials. Very few patients, caregivers or providers had looked for clinical trials on the internet or social media. Conclusions: African American and white adults were interested in clinical trials but not clear how to learn about them. Most were willing to participate but had never been asked. Recommendation to participate in a clinical trial is most effective coming from a trusted physician. Methods for getting community providers and the public useful information needs to be created with target audiences. Citation Format: Terry Davis, Connie Arnold, Lucio Miele, Glenn Mills. Biobanking and genomic research: Understanding and acceptance of safety-net patients, primary care providers and minority groups [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2018; 2018 Apr 14-18; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2018;78(13 Suppl):Abstract nr 3010.

Prototype Development of a Responsive Emotive Sensing System (DRESS) to aid older persons with dementia to dress independently.

Prior research has critiqued the lack of attention to the stressors associated with dementia related dressing issues, stigmatizing patient clothing, and wearable technology challenges. This paper describes the conceptual development and feasibility testing of an innovative 'smart dresser' context aware affective system (DRESS) to enable dressing by people with moderate memory loss through individualized audio and visual task prompting in real time. Mixed method feasibility study involving qualitative focus groups with 25 Alzheimer's family caregivers experiencing dressing difficulties to iteratively inform system design and a quantitative usability trial with 10 healthy subjects in a controlled laboratory setting to assess validity of technical operations. Caregivers voiced the need for tangible dressing assistance to reduce their frustration from time spent in repetitive cueing and power struggles over dressing. They contributed 6 changes that influenced the prototype development, most notably adding a dresser top iPad to mimic a familiar 'TV screen' for the audio and visual cueing. DRESS demonstrated promising overall functionality, however the validity of identification of dressing status ranged from 0% for the correct pants dressing to 100% for all shirts dressing scenarios. Adjustments were made to the detection components of the system raising the accuracy of detection of all acted dressing scenarios for pants from 50% to 82%. Findings demonstrate family caregiver acceptability of the proposed system, the successful interoperability of the built system's components, and the system's ability to interpret correct and incorrect dressing actions in controlled laboratory simulations. Future research will advance the system to the alpha stage and subsequent testing with end users in real world settings.

Positive feelings of caregiving among Latino Alzheimer's family caregivers: Understanding the role of spirituality

This study used structural equation modeling to examine the effects of spirituality on positive aspects of caregiving (PAC) among a sample of American Latino family members caring for a relative with Alzheimer's disease (AD). Participants consisted of 209 Latino caregivers (CGs) drawn from baseline data from the Resources for Enhancing Alzheimer's Caregivers Health II study. The findings indicate that spirituality is positively related to PAC and may partially mediate the effect of subjective stress on PAC. AD CGs typically provide better care when they perceive the caregiving experience to be satisfying and rewarding. Toward this end, gerontological practitioners should adopt a proactive stance to ensure Latino AD CGs can operationalize their spiritual strengths.

Attentes et besoins des aidants de personnes souffrant de maladie d’Alzheimer

BackgroundFamily members of people suffering from Alzheimer's disease play a major role in providing daily life care for their relatives. Compared to non-caregivers, they present increased risks of mortality as well as psychological and physical co-morbidity. Altered relationships between caregivers and medical staff and dissatisfaction with the quality of help provided tend to increase the risk of depression and anxiety disorders among caregivers. The present study aimed at exploring the needs and expectations of family caregivers of patients with Alzheimer's disease who request medical assistance for their relatives. MethodsThe present analysis is an ancillary study of a large multicentric controlled randomized study designed to assess the efficacy of three non-pharmacological treatments in Alzheimer's disease, in which 645 mild-to-moderate Alzheimer patients were enrolled. Needs and expectations of the caregivers were assessed with a French scale of patient expectations for medical consultation, the échelle d’attentes en matière de consultations (EAC), completed by caregivers during the inclusion visit. This scale consists in a self-administered 28-item questionnaire concerning four main needs: learning skills to improve daily life management of their relatives; information regarding the disease; improving caregivers’ self-confidence; support to improve communication with their relatives. ResultsThe ten items for which more than 40% of caregivers reported high or very high expectations referred to two main needs: information regarding the disease (treatment, prognosis…) and learning skills in order to improve daily life management of their relative. The predominance of such needs was observed whatever the relationship between the caregiver and the cared relative but seemed to be more pronounced in female spouses and children of patients with Alzheimer's disease. ConclusionsNeeds and expectations of Alzheimer's disease family caregivers involve two major aspects: first, information regarding the disease (treatment, prognosis…) and second, learning skills for improving daily life management of their relative. These results suggest that among the various available family caregivers support programs, programs providing information, education, and practical advice to improve daily life assistance seem to be adequate.

Video-Based Coping Skills to Reduce Health Risk and Improve Psychological and Physical Well-Being in Alzheimer's Disease Family Caregivers

To determine whether video-based coping skills (VCS) training with telephone coaching reduces psychosocial and biological markers of distress in primary caregivers of a relative with Alzheimer's disease or related dementia (ADRD). A controlled clinical trial was conducted with 116 ADRD caregivers who were assigned, alternately as they qualified for the study, to a Wait List control condition or the VCS training arm in which they viewed two modules/week of a version of the Williams LifeSkills Video adapted for ADRD family care contexts, did the exercises and homework for each module presented in an accompanying Workbook, and received one telephone coaching call per week for 5 weeks on each week's two modules. Questionnaire-assessed depressive symptoms, state and trait anger and anxiety, perceived stress, hostility, caregiver self-efficacy, salivary cortisol across the day and before and after a stress protocol, and blood pressure and heart rate during a stress protocol were assessed before VCS training, 7 weeks after training was completed, and at 3 months' and 6 months' follow-up. Compared with controls, participants who received VCS training plus telephone coaching showed significantly greater improvements in depressive symptoms, trait anxiety, perceived stress, and average systolic and diastolic blood pressures that were maintained over the 6-month follow-up period. VCS training augmented by telephone coaching reduced psychosocial and biological indicators of distress in ADRD caregivers. Future studies should determine the long-term benefits to mental and physical health from this intervention. http://www.clinicaltrials.gov; #NCT00396825.

Acceptance of wearable technology by people with Alzheimer's disease: issues and accommodations.

The increasing number of cognitively impaired older adults who exhibit wandering tendencies raises safety concerns. The purpose of the current study was to research the State-of the-Art in Wearable Technologies for persons with Alzheimer's Disease and identify challenges unique to this population and lessons learned. Inclusion criteria specified systems/devices that completed laboratory testing and were commercially available for usage by community-based Alzheimer's family caregivers. Methods included a series of Internet product searches and telephone interviews with related corporate representatives and participant's referrals. Results indicated many products in development or academic research use but only a limited number were available that met the study criteria. The interviews with key informants revealed features necessary to consider when making products to be worn by persons with cognitive impairment. In conclusion, there is no ideal solution and opportunities remain for marketplace innovations and for addressing the challenges associated with balancing safety and security.

Dysfunctional thoughts in Alzheimer's disease family caregivers: Does age matter?

Dysfunctional thoughts in Alzheimer's disease family caregivers: Does age matter?

Development of an Intervention Program for Alzheimer's Family Caregivers Following Diagnostic Disclosure

The purpose of this qualitative study was to develop a pro-active psycho-educational intervention program for Alzheimer's family caregivers following diagnostic disclosure. Based on a theoretical model of role transitions and a participatory approach, the study comprised four steps: (a) exploring caregiver needs; (b) developing and validating a program proposal based on caregiver-expressed needs; (c) formalizing program through intervention mapping; and (d) testing and qualitatively evaluating the program. The psycho-educational program consisted of seven individual sessions aimed at fostering knowledge and skills required to ensure successful transition to the caregiver role. The approach used in this study can serve as a guide for the development of nursing intervention programs. Intervention mapping allowed, in particular, integrating theoretical and empirical elements in a formal intervention model.

Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis.

Feelings of loss and grief are frequent companions for current Alzheimer's family caregivers. Increased acknowledgment and understanding of caregiver grief among researchers has led to more comprehensive explorations of the multifaceted nature of caregiver grief and loss. Absent from the literature, however, is an exploration of anticipatory grief as an actual barrier to the task of caregiving. Through an analysis of 353 open-ended survey responses, the present article explores links between anticipatory grief, ambiguous loss, and principal barriers that family members face as dementia caregivers across the state of Indiana. By drawing parallels between caregiver responses and the Marwit-Meuser Caregiver Grief Inventory subscales, this article illustrates that the fundamental barrier experienced by current Alzheimer's caregivers appears to be a combination of anticipatory grief and ambiguous loss rather than hands-on care issues. The implications of this finding for future caregiver research and interventions are discussed.

A relaxation training program to increase self-efficacy for anxiety control in Alzheimer family caregivers.

This study investigated whether relaxation training would increase caregivers' self-efficacy for controlling anxiety associated with difficult behaviors by care recipients. Thirty-six individuals caring for relatives with Alzheimer's disease were taught four types of relaxation techniques. Caregivers' self-efficacy increased following the intervention. Length of time spent in the caregiving role and duration of time since care recipients' diagnosis were significantly related to caregiver self-efficacy before the intervention, but became non-significant following the intervention. An insignificant decrease in incidence of reported behavioral problems occurred following the intervention.

Caregiver Self-Rated Health in Alzheimer's Disease

ABSTRACT Poorer self-rated physical health represents an important outcome of dementia caregiving. However, the impact of specific care-giver and patient factors on this variable remains unclear. This study investigated factors associated with perceived health status among 64 white non-Hispanic family caregivers of community-dwelling Alzheimer's disease (AD) patients. In the current study, greater depressive symptoms reported by the caregiver and older caregiver age predicted poorer self-rated health. The results suggest caregiver variables, rather than patient characteristics, are the principal factors impacting the perceived physical adjustment of AD family caregivers in the community.

Predictors of Appraisal and Psychological Well-Being in Alzheimer's Disease Family Caregivers

The objective of this study was to test a model of stress, appraisal, and adaptation in 114 family caregivers of patients diagnosed with dementia of the Alzheimer's type (white non-Hispanic, N = 64; Hispanic-American, N = 50). Results of structural equation analysis show that appraised caregiver burden played a central role in determining the psychological well-being of family caregivers. The findings indicate that this mediating variable, negative caregiver appraisal, was predicted by increased functional limitations and behavioral disturbances in the patient, poorer perceived physical health, and lower levels of perceived emotional support. Contrary to a priori hypotheses, functional limitations in the patient also exhibited a direct association with caregiver depression. Further, patient cognitive impairment and caregiver ethnicity were not related to caregiver appraisal. Overall, these results support the role of appraised burden in mediating the relationships between caregiving factors and the adaptational outcome of depression. The implications of these findings, limitations of the study, and future directions are discussed.