The Effects of Declining Functional Abilities in Dementia Patients and Increases in Psychological Distress on Caregiver Burden Over a One-Year Period

Abstract. Research shows that caregivers of dementia patients experience burden and psychological distress, but it is unclear whether or not caregivers of individuals with cognitive impairments that do not meet a diagnosis for dementia also experience similar burdens and psychological problems. Sixty patients and their caregivers participated in this study designed to examine caregiver burden. The patients completed activities-of-daily-living tasks and several neuropsychological tests assessing memory, abstract reasoning, and language. Caregivers completed self-report measures assessing caregiver burden and psychological distress. Results revealed that the caregivers of patients with mild Alzheimer’s disease (mAD) reported greater physical burden and feelings of missing out on life compared to individuals with mild cognitive impairment (MCI) caregivers. The mAD caregivers indicated greater depression and anxiety relative to MCI caregivers. Stepwise regression found that patient neuropsychological scores were worse predictors of caregiver burden than patients’ daily functioning. The conclusions of this study suggest that (1) caregivers of mAD are likely to experience more severe types of burden and psychological distress relative to caregivers of MCI patients, and that (2) patients’ daily functional abilities better predict caregivers’ burden and psychological distress than patients’ neuropsychological functioning. Study findings suggest that caregivers of those in the early stages of dementia, even in persons not yet meeting a diagnosis, experience psychological symptoms and burden, and that these caregivers’ experiences can be best predicted by the patients daily functional ability than by patients’ neuropsychological test scores.

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Delays in Manual Reaching Are Associated with Impaired Functional Abilities in Early Dementia Patients

Dementia and Geriatric Cognitive Disorders ◽

10.1159/000377674 ◽

2015 ◽

Vol 40 (1-2) ◽

pp. 63-71 ◽

Cited By ~ 1

Author(s):

Casper de Boer ◽

Johan J.M. Pel ◽

Johannes van der Steen ◽

Francesco Mattace-Raso

Keyword(s):

Daily Living ◽

Hand Movement ◽

Hand Tracking ◽

Functional Abilities ◽

Dementia Patients ◽

Early Dementia ◽

Tracking Devices ◽

The Impact ◽

Hand Response

Background/Aims: Recent evidence shows that early dementia patients have deficits in manual reaching tasks. It is important to understand the impact of these functional disabilities on their quality of life. The aim of this study was to investigate if there is an association between manual reaching and measures of (instrumental) activities of daily living (IADL) in a group of patients with cognitive complaints. Methods: The manual reaching performance of 27 patients was assessed in detail with eye and hand tracking devices. Patients were divided into three groups based on self-reported loss of IADL function. Parameters describing hand response and movement times were compared between groups. Results: Patients with loss of IADL function in ≥1 domain had delayed hand response and hand movement times towards visible targets compared to patients with no loss of IADL function. Conclusion: Delays in manual reaching movements are related to the degree of loss of IADL function in early dementia patients.

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Adapting Resources for Enhancing Alzheimer's Caregiver Health for Dementia-Capable Services

Innovation in Aging ◽

10.1093/geroni/igaa057.179 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 55-55

Author(s):

Mindi Spencer ◽

Maggi Miller ◽

Diana Jahries ◽

James Davis ◽

S Melinda Spencer

Keyword(s):

Problem Behaviors ◽

Caregiver Burden ◽

Care Recipient ◽

Caregiver Training ◽

Training Support ◽

Caregiver Health ◽

Dementia Patients ◽

Post Test ◽

And Coping ◽

Training And Support

Abstract The overall goal of the PRISMA Health - REACH (PH-REACH) project was to reduce caregiver burden and improve caregiving skills among caregivers of community-living Alzheimer's disease and related dementia patients and, as a result, improve care and quality of life for both the patients and their caregivers. This evidence-based, person-centered program emphasizes positive aspects of caregiving and provides tools to improve stress management, caregiver self-care, and coping skills for managing problem behaviors. PH-REACH provided in-home caregiver training, support, and service referral to 126 caregivers in the Greenville area. Trained coaches delivered the program to caregivers of persons with moderate to severe dementia in its original format but later adapted it to better fit the caregivers’ needs. Analysis of pre- and post-test data showed that both the standard and adapted interventions provided benefits across multiple caregiver outcomes, including reduced caregiver burden, ability to manage disruptive behaviors of the care recipient, increased caregiver self-efficacy, reduced depression, and a slight improvement in the number of chronic health conditions. This supports and expands on previous research that has demonstrated the ability of this program to translate across different community-based and clinical settings. The tailored version of PH-REACH succeeded in assisting these caregivers, meeting them where they were in their caregiving journey, and provided measurable benefits to both their mental and physical health. Overall, this project provided evidence of the utility of the PH-REACH intervention and laid the groundwork to extend caregiver training and support to other institutions, both inside and outside the health system.

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THE ROLE OF RELIGION IN CAREGIVER BURDEN AND DEPRESSION FOR FAMILY CAREGIVERS OF DEMENTIA PATIENTS

Innovation in Aging ◽

10.1093/geroni/igx004.559 ◽

2017 ◽

Vol 1 (suppl_1) ◽

pp. 139-139 ◽

Cited By ~ 2

Author(s):

S. Shin ◽

M. Huddleson ◽

L.M. Brown ◽

T. Tormala ◽

R.G. Gomez

Keyword(s):

Family Caregivers ◽

Caregiver Burden ◽

Dementia Patients ◽

Role Of Religion

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Caregiver Burden for Patients With Severe Osteoarthritis Significantly Decreases by One Year After Total Knee Arthroplasty

The Journal of Arthroplasty ◽

10.1016/j.arth.2018.08.030 ◽

2018 ◽

Vol 33 (12) ◽

pp. 3660-3665 ◽

Cited By ~ 2

Author(s):

Jayson D. Zadzilka ◽

Alison K. Klika ◽

Cecilia Calvo ◽

Juan C. Suarez ◽

Preetesh D. Patel ◽

...

Keyword(s):

Total Knee Arthroplasty ◽

Caregiver Burden ◽

Knee Arthroplasty ◽

Total Knee ◽

One Year

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A Randomized Controlled Trial of Emotion Regulation Therapy for Psychologically Distressed Caregivers of Cancer Patients

JNCI Cancer Spectrum ◽

10.1093/jncics/pkz074 ◽

2019 ◽

Vol 4 (1) ◽

Cited By ~ 2

Author(s):

Mia S O’Toole ◽

Douglas S Mennin ◽

Allison Applebaum ◽

Britta Weber ◽

Hanne Rose ◽

...

Keyword(s):

Randomized Controlled Trial ◽

Emotion Regulation ◽

Psychological Distress ◽

Cancer Patients ◽

Caregiver Burden ◽

Controlled Trial ◽

Post Treatment ◽

Randomized Controlled ◽

Behavioral Therapies ◽

Cognitive Behavioral Therapies

Abstract Background Previous cognitive behavioral therapies for informal caregivers (ICs) have produced negligible effects. The purpose of this study was to evaluate, in a randomized controlled trial, the efficacy of Emotion Regulation Therapy adapted for caregivers (ERT-C) on psychological and inflammatory outcomes in psychologically distressed ICs and the cancer patients cared for. Methods A total of 81 ICs with elevated psychological distress were randomly assigned to ERT-C or a waitlist condition and assessed pre-, mid-, and post-treatment. In 52 cases, the patient cared for by the IC was included. Patients did not receive ERT-C. Both the ERT-C and waitlist groups were followed 3 and 6 months post-treatment. Data were analyzed with multilevel models, and P values were two-sided. Results Compared with ICs in the waitlist condition, ICs in the ERT-C condition experienced medium to large statistically significant reductions in psychological distress (Hedge’s g = 0.86, 95% confidence interval [CI] = 0.40 to 1.32, P < .001), worry (g = 0.96, 95% CI = 0.50 to 1.42, P < .001), and caregiver burden (g = 0.53, 95% CI = 0.10 to 1.99, P = .007) post-treatment. No statistically significant effects were found for rumination (g = 0.24, 95% CI = −0.20 to 0.68, P = .220). Results concerning caregiver burden were maintained through 6 months follow-up. Although the effects on psychological distress and worry diminished, their end-point effects remained medium to large. No statistically significant effects on systemic inflammation were detected (C-reactive protein: g = .17, 95% CI = −0.27 to 0.61, P = .570; interleukin-6: g = .35, 95% CI = −0.09 to 0.79, P = .205; tumor necrosis factor-alpha: g = .11, 95% CI = −0.33 to 0.55, P = .686). Patients whose ICs attended ERT-C experienced a large increase in quality of life post-treatment (g = 0.88, 95% CI = 0.18 to 1.58, P = .017). Conclusions To our knowledge, this is the first randomized controlled trial evaluating the efficacy of ERT-C for ICs. Given the previous disappointing effects of other cognitive behavioral therapies for this population, the present findings are very encouraging. Identifying ICs with elevated psychological distress and providing them with relevant psychotherapy appears an important element of comprehensive cancer care.

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Persistent psychological distress in resettled refugee women-at-risk at one-year follow-up: Contributions of trauma, post-migration problems, loss, and trust

Transcultural Psychiatry ◽

10.1177/1363461520965110 ◽

2020 ◽

pp. 136346152096511

Author(s):

Lyn Vromans ◽

Robert D. Schweitzer ◽

Mark Brough ◽

Mary Asic Kobe ◽

Ignacio Correa-Velez ◽

...

Keyword(s):

At Risk ◽

Psychological Distress ◽

Somatic Symptoms ◽

Initial Assessment ◽

Community Members ◽

Refugee Women ◽

Distress Level ◽

One Year ◽

Refugee Literature

The mental health of women has been largely neglected in the refugee literature, notwithstanding the specific gender-related issues that confront women seeking asylum. Furthermore, a specific category of women, deemed to be women-at-risk, face particular challenges in their journey and resettlement process. This longitudinal study investigated psychological distress in refugee women-at-risk one year after resettlement in Australia. Follow-up survey of 83 women-at-risk (mean age = 33.41 years; SD = 11.93) assessed: trauma events and symptoms; loss events and loss distress; level of post-migration problems; anxiety, depression, and somatic symptoms; and absence of trust in community members. Participants demonstrated no symptom change since initial assessment ( p > .05). Substantial proportions of women reported traumatization (39%), PTSD (20%), anxiety (32%), and depression (39%) above clinical cut-offs, and high levels of somatization and loss distress. Post-migration problems, trauma events, and region of birth were associated with all symptoms, with post-migration problems the strongest predictor. Absence of trust in community members was associated with trauma, depression, and somatic symptoms. Initial trauma and somatic symptoms were associated with follow-up traumatic and somatic symptoms. Loss and trauma events were associated with loss distress. Findings underline the role of post-migration problems on psychological distress and the need to consider women’s psychological wellbeing in the context of their trauma and loss history, potential impacts of ethnicity, and complex socio-cultural dynamics underpinning issues of trust within communities. Effective service delivery requires that practitioners screen for and address psychological distress in women-at-risk at least up to 18 months after resettlement.

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Individual quality of life in spousal ALS patient-caregiver dyads

Health and Quality of Life Outcomes ◽

10.1186/s12955-020-01551-5 ◽

2020 ◽

Vol 18 (1) ◽

Author(s):

Miriam Galvin ◽

Tommy Gavin ◽

Iain Mays ◽

Mark Heverin ◽

Orla Hardiman

Keyword(s):

Quality Of Life ◽

Health Care ◽

Psychological Distress ◽

Caregiver Burden ◽

Life Quality ◽

Individual Quality ◽

Care Providers ◽

Individual Quality Of Life ◽

Over Time

Abstract Background Quality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is currently no curative treatment. Aim To explore individual quality of life of people with ALS and their informal caregivers over time. Methods Over three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases. Results Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point. Family, hobbies and social activities were the main self-defined contributors to quality of life. The importance of health declined relative to other areas over time. Friends and finances became less important for patients, but were assigned greater importance by caregivers across the illness trajectory. Psychological distress was higher among caregivers. Caregiver burden consistently increased. Conclusion The findings from this study point to the importance of exploring and monitoring quality of life at an individual level. Self-defined contributory factors are relevant to the individual within his/her context. As an integrated outcome measure individual quality of life should be assessed and monitored as part of routine clinical care during the clinical encounter. This can facilitate conversations between health care providers, patients and families, and inform interventions and contribute to decision support mechanisms. The ascertainment of self-defined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care.

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Psychological distress one year after childbirth: A cross-cultural comparison between France, Italy and Quebec

European Journal of Public Health ◽

10.1093/eurpub/13.3.218 ◽

2003 ◽

Vol 13 (3) ◽

pp. 218-225 ◽

Cited By ~ 6

Author(s):

C. Des Rivieres-Pigeon

Keyword(s):

Psychological Distress ◽

Cross Cultural ◽

Cultural Comparison ◽

Cross Cultural Comparison ◽

One Year

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Does disability modify the relationship between labour force status and psychological distress among young people?

Occupational and Environmental Medicine ◽

10.1136/oemed-2020-107149 ◽

2020 ◽

pp. oemed-2020-107149

Author(s):

Marissa Shields ◽

Stefanie Dimov ◽

Tania L King ◽

Allison Milner ◽

Anne Kavanagh ◽

...

Keyword(s):

Psychological Distress ◽

Young People ◽

Labour Force ◽

Poor Mental Health ◽

Logistic Regression Models ◽

Labour Force Status ◽

Disability Status ◽

Effect Measure Modification ◽

One Year ◽

The Relationship

ObjectiveTo examine the association between labour force status, including young people who were unemployed and having problems looking for work, and psychological distress one year later. We then assessed whether this association is modified by disability status.MethodsWe used three waves of cohort data from the Longitudinal Surveys of Australian Youth. We fitted logistic regression models to account for confounders of the relationship between labour force status (employed, not in the labour force, unemployed and having problems looking for work) at age 21 years and psychological distress at age 22 years. We then estimated whether this association was modified by disability status at age 21 years.ResultsBeing unemployed and having problems looking for work at age 21 years was associated with odds of psychological distress that were 2.48 (95% CI 1.95 to 3.14) times higher than employment. There was little evidence for additive effect measure modification of this association by disability status (2.52, 95% CI −1.21 to 6.25).ConclusionsYoung people who were unemployed and having problems looking for work had increased odds of poor mental health. Interventions should focus on addressing the difficulties young people report when looking for work, with a particular focus on supporting those young people facing additional barriers to employment such as young people with disabilities.

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