scholarly journals Caring for People With Dementia Under COVID-19 Restrictions: A Pilot Study on Family Caregivers

2021 ◽  
Vol 13 ◽  
Author(s):  
Elena Carbone ◽  
Rocco Palumbo ◽  
Alberto Di Domenico ◽  
Silvia Vettor ◽  
Giorgio Pavan ◽  
...  
Keyword(s):  
Pilot Study ◽  
Family Caregivers ◽  
Psychological Symptoms ◽  
Significant Negative Correlation ◽  
Healthcare Services ◽  
Individual Characteristics ◽  
Social And Emotional ◽  
Care Recipients ◽  
People With Dementia ◽  
Emotional Loneliness

IntroductionThe present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers’ distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers’ distress, and sense of social and emotional loneliness, and resilience were also investigated.Materials and MethodsThirty-five caregivers of RwD attending formal healthcare services before the COVID-19 lockdown volunteered for the study, and were interviewed by phone during the lockdown. Caregivers completed the NeuroPsychiatric Inventory (NPI) to assess their care recipients’ BPSD and their own distress, and two questionnaires assessing their social and emotional loneliness, and their resilience.ResultsNo clear changes emerged in either the BPSD of the RwD or the caregivers’ distress during lockdown compared with before the pandemic. Caregivers reporting more frequent and severe BPSD in their RwD before the lockdown scored higher on emotional loneliness. Those reporting more frequent and severe BPSD under lockdown, especially men and those taking care of RwD with more advanced dementia, scored higher on both social and emotional loneliness. A significant negative correlation also emerged between caregivers’ resilience and changes in their level of distress due to the lockdown, with female caregivers reporting greater resilience.DiscussionOur findings offer preliminary insight on the effects of loneliness and resilience, and on the influence of individual characteristics on the experience and consequences of informal caregiving for RwD in times of restrictions imposed by a pandemic.

scholarly journals 411 - Implementing the STrAtegies for RelaTives (START) intervention in Portugal – preliminary findings

2020 ◽  
Vol 32 (S1) ◽  
pp. 127-127
Author(s):  
Fatima Urzal ◽  
Ana Quintão ◽  
Catarina Santos ◽  
Nuno Moura ◽  
Ana Banazol ◽  
...  
Keyword(s):  
Pilot Study ◽  
Coping Strategies ◽  
Family Caregivers ◽  
Clinical Training ◽  
Unmet Needs ◽  
Depression Scale ◽  
Subjective Impression ◽  
Implementation Challenges ◽  
People With Dementia ◽  
The Uk

IntroductionAs in other countries, Portuguese family caregivers have unmet needs regarding information and distress. START (STrAtegies for RelaTives) is a manual-based coping intervention for families of people with dementia, including coping strategies and stress-management components, by Livingston and colleagues (https://www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start). In the UK, START has been clinically effective, immediately and continuing even after 6-years, without increasing costs. Clinical training and supervision ensures treatment fidelity. In Portugal, these kind of interventions are less available and, when provided, are mostly supportive and fail to address coping strategies. Paradoxically, recruitment may also prove challenging.ObjectivesWe describe the development of the Portuguese translation of START, incorporating guidance from the UK team, and a pilot study of delivery to family caregivers of people with dementia. We will also discuss the challenges of recruiting participants and delivering the intervention.MethodWe translated the START intervention and recruited family caregivers from neurology and psychiatry outpatients, in a central hospital in Lisbon. Our baseline assessment included the Hospital Anxiety and Depression Scale and the Zarit Burden Interview. The pilot is still ongoing at time of submitting, so we focus on recruitment, baseline assessments and process issues.ResultsDuring a three-month period, we recruited six caregivers. Five were primary caregivers (spouses or adult children) who had been caring for their relatives for 2 up to 10 years. Two caregivers met the international cutoff for clinically relevant affective disorder . The most frequent motivators for taking part were learning to communicate with their relatives and increasing knowledge to build community resources. Overall, the subjective impression of the therapist in charge is that the intervention seems acceptable and promising.Discussion/ConclusionsThis pilot study will eventually lead to an improved version of the Portuguese version of the START manual. So far, the intervention seems appropriate for selected caregivers in Portugal. However, response to striking unmet needs, particularly basic home support, may need to precede interventions like START. We look forward to concluding the intervention study and analyzing the implementation challenges, as a basis to inform a wider-scale trial.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

2021 ◽  
pp. 019394592110557
Author(s):  
Melissa L. Harris ◽  
Marita G. Titler
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Behavioral Responses ◽  
Well Being ◽  
Comparative Methods ◽  
People With Dementia ◽  
Effective Care ◽  
Exploratory Approach ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.

A Pilot Study on the Efficacy of Stress Relief Programs for Family Caregivers of Older People with Dementia

2020 ◽  
Vol 41 (9) ◽  
pp. 824-831 ◽  
Author(s):  
Pi-Lan Tsai ◽  
Shu-Min Chan ◽  
Ru Shang Jiang ◽  
Shwu-Hua Lee ◽  
Jung Lung Hsu
Keyword(s):  
Pilot Study ◽  
Older People ◽  
Family Caregivers ◽  
Stress Relief ◽  
People With Dementia

Effects of a Modified Mindfulness-Based Cognitive Therapy for Family Caregivers of People With Dementia: A Randomized Clinical Trial

2020 ◽  
Author(s):  
Patrick Pui Kin Kor ◽  
Justina Y W Liu ◽  
Wai Tong Chien
Keyword(s):  
Cognitive Therapy ◽  
Family Caregivers ◽  
Intervention Group ◽  
Psychological Outcomes ◽  
Control Group ◽  
Dementia Caregiving ◽  
Care Recipients ◽  
People With Dementia ◽  
T1 And T2

Abstract Background and Objectives Family caregivers of people with dementia (PWD) experience high levels of stress resulting from caregiving. This study aimed to investigate the effects of a modified of Mindfulness-Based Cognitive Therapy (MBCT) for dementia caregiving. Research Design and Methods 113 family caregivers of PWD were randomized to either the intervention group, receiving the 7-session modified MBCT for a period of 10 weeks with telephone follow-up or the control group, receiving the brief education on dementia care and usual care. The caregiving stress (primary outcome) and various psychological outcomes of caregivers and the behavioral and psychological symptoms of dementia (BPSD) in the care recipients were assessed and compared at baseline (T0), postintervention (T1), and at the 6-month follow-up (T2). Results At both T1 and T2, the intervention group had a statistically greater improvement in stress (p = .02 and .03), depression (p = .001 and .04), anxiety (p = .007 and .03), and BPSD-related caregivers’ distress (p = .003 and p = .04). A significant greater improvement was also demonstrated in mental health-related quality of life at T2 (p = .001) and BPSD of the care recipients at T1 (p = .04). The increased caregivers’ level of mindfulness was significantly correlated with the improvement of various psychological outcomes at T1 and T2 with a correlation coefficient −0.64 to 0.43. Discussion and Implications The modified MBCT enhanced the level of mindfulness in the caregivers and was effective to reduce the caregivers’ stress and promote their psychological well-being during a 6-month follow-up. Future research is recommended to further examine its effects on the varieties of psychological and behavioral outcomes of both caregivers and care recipients and their dyadic relationships, as well as explore its mechanism of action in facilitating dementia caregiving. Clinical Trials Registration Number NCT03354819

Potentially preventable hospitalizations in dementia: family caregiver experiences

2017 ◽  
Vol 29 (7) ◽  
pp. 1201-1211 ◽  
Author(s):  
Tatiana Sadak ◽  
Susan Foster Zdon ◽  
Emily Ishado ◽  
Oleg Zaslavsky ◽  
Soo Borson
Keyword(s):  
Lived Experience ◽  
Family Caregivers ◽  
Care Recipient ◽  
Preventable Hospitalizations ◽  
Health Crisis ◽  
Care Recipients ◽  
People With Dementia ◽  
Mitigating Factors ◽  
Health Event ◽  
Caregiver Experiences

ABSTRACTBackground:Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions.Methods:Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers’ reactions to the hospitalization and recollections of the events leading up to it.Results:Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises.Conclusions:This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

scholarly journals Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral Symptoms of Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 2-3
Author(s):  
Magaly Ramirez ◽  
Miriana Duran ◽  
Chester Pabiniak ◽  
Kelly Hansen ◽  
James Ralston ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Hybrid Approach ◽  
Healthcare Providers ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Virtual Training ◽  
Study Objective ◽  
People With Dementia ◽  
Traditional Service

Abstract STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that teaches family caregivers to manage behavioral and psychological symptoms of dementia (BPSD). The study objective was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. We conducted 15 semi-structured interviews with family caregivers of people with dementia. We showed caregivers prototypes of STAR-VTF online self-directed materials. We obtained caregiver feedback, focusing on needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said healthcare providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the healthcare organization to offer programs such as STAR-VTF much sooner. Many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities. Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers reported a preference for having the same coach for the program duration.

scholarly journals Predictors of Depressive Symptoms among Family Caregivers of Patients with Dementia in Java, Indonesia

2021 ◽  
Vol 73 (8) ◽  
pp. 549-558
Author(s):  
Yossie Susanti Eka Putri ◽  
Yajai Sitthimongkol ◽  
Virapun Wirojratana ◽  
Natkamol Chansatitporn
Keyword(s):  
Social Support ◽  
Depressive Symptoms ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Mental Health Problems ◽  
Psychological Symptoms ◽  
Healthcare Services ◽  
Cross Sectional ◽  
The Family ◽  
The Relationship

Objective: Depressive symptoms are common mental health problems among the family caregivers of patients with dementia. However, little is known about the prevalence of depressive symptoms among the family caregivers of patients with dementia in Indonesia. This study aimed to examine: 1) the factors predicting depressive symptoms, 2) the mediating role of social support in the relationship between burden and depressive symptoms, and 3) the association between depressive symptoms and healthcare utilization among family caregivers.Materials and Methods: This was a cross-sectional study involving 250 family caregivers of patients with dementia recruited from four hospitals in Java, Indonesia. Data were collected by Zarit Burden Interview (ZBI); the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Mastery scale, the Multidimensional Scale of Perceived Social Support, and the Center for Epidemiologic Studies Depression (CES-D) Scale. Descriptive statistics, chi-square test, hierarchical multiple linear regression, and Baron and Kenny's regression method were used to analyze the data.Results: The results revealed that about a quarter of the participants (24.8%) experienced depressive symptoms. Caregiver burden, mastery, behavioral and psychological symptoms of dementia, and social support explained 45.5% of the variance in the prevalence of depressive symptoms among family caregivers (R2=0.455). Social support also partially mediated the association between caregiver burden and depressive symptoms. There was no association between depressive symptoms and the use of healthcare services among the family caregivers.Conclusion: The findings revealed that social support is a mediating factor affecting the relationship between caregiver burden and depressive symptoms. Interventions targeting social support to help alleviate caregiver burden would be effective in helping reduce depressive symptoms in the family caregivers of patients with dementia.

Online and onsite training for family caregivers of people with dementia: results from a pilot study

2012 ◽  
Vol 28 (1) ◽  
pp. 107-108 ◽  
Author(s):  
Claudia K. Y. Lai ◽  
L. F. Wong ◽  
Kit-Han Liu ◽  
Winnie Lui ◽  
M. F. Chan ◽  
...  
Keyword(s):  
Pilot Study ◽  
Family Caregivers ◽  
People With Dementia

Psychosocial correlates of nutritional status of family caregivers of persons with dementia

2013 ◽  
Vol 26 (1) ◽  
pp. 105-113 ◽  
Author(s):  
Laetitia Rullier ◽  
Alexia Lagarde ◽  
Jean Bouisson ◽  
Valérie Bergua ◽  
Marion Torres ◽  
...  
Keyword(s):  
Nutritional Status ◽  
Family Caregivers ◽  
Rural Areas ◽  
Depression Scale ◽  
Mini Nutritional Assessment ◽  
Individual Characteristics ◽  
Community Dwelling ◽  
Nutritional Risk ◽  
People With Dementia ◽  
Integrative View

ABSTRACTBackground:This exploratory study investigated the associations of individual characteristics of both persons with dementia and family caregivers with the nutritional status of caregivers.Methods:This cross-sectional study was conducted at home by psychogerontologist within the frame of a community gerontological center in rural areas of south west France. The study participants comprised 56 community-dwelling persons with dementia (mean 80.7 years, SD 6.5) and 56 family caregivers (mean 70.9 years, SD 11.0). Persons with dementia were assessed with Mini-Mental State Examination (MMSE), Basic Activities Of Daily Living (ADL), Instrumental ADL (IADL), and NeuroPsychiatric Inventory (NPI), and family caregivers with the Burden Interview (Zarit scale), the State-Trait Anxiety Inventory (STAI Y-B), the Center for Epidemiologic Studies Depression Scale (CES-D), the emotional impact measure of NPI and the Autonomy, Gerontology and Group Resources scale (AGGIR scale). For both, nutritional status was evaluated using the Mini Nutritional Assessment (MNA®).Results:Among family caregivers, 32.1% were at risk of malnutrition and 5.4% were malnourished, and among people with dementia, 58.9% and 23.2%, respectively. NPI severity score of apathy of persons with dementia (Beta = −0.342, p = 0.001), dependency on AGGIR scale (Beta = −0.336, p = 0.002), and CES-D score of caregivers (Beta = −0.365, p = 0.001) were associated with caregivers’ MNA score (Adjusted R2 = 0.480, p < 0.001).Conclusion:These preliminary findings emphasize the need for routine assessment of depressive symptoms, functional and nutritional status in dementia family caregivers, and confirm the value of investigating caregivers’ nutritional risk through an integrative view including psychosocial approach.

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