scholarly journals Information Needs of Family Caregivers of People With Dementia

2016 ◽  
Vol 41 (3) ◽  
pp. 162-169 ◽  
Author(s):  
Victoria Steiner ◽  
Linda L. Pierce ◽  
Diane Salvador
Keyword(s):  
Family Caregivers ◽  
Information Needs ◽  
People With Dementia

Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

2018 ◽  
Author(s):  
Abu Sikder ◽  
Francis Yang ◽  
Rhiana Schafer ◽  
Glenna A. Dowling ◽  
Lara Traeger ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Mobile Application ◽  
Self Regulation ◽  
Pilot Trial ◽  
Depression Symptom ◽  
Structured Interviews ◽  
Physical Strain ◽  
Dementia Caregivers ◽  
Loved One ◽  
People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

scholarly journals The Voices of Persons Living With Dementia: Exploring Their Information Needs to Live Well

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 60-60
Author(s):  
Michelle Kimzey ◽  
Ramona Baucham ◽  
Chelsea Martin ◽  
Carol Howe
Keyword(s):  
Health Literacy ◽  
Health Information ◽  
Information Needs ◽  
Hybrid Approach ◽  
Convenience Sample ◽  
Health Decisions ◽  
People With Dementia ◽  
Care Partners ◽  
Diagnosis Of Dementia ◽  
Services And Supports

Abstract There are unique challenges and considerations when receiving the diagnosis of dementia. There are interventions, services, and supports for people with dementia and their care partners, yet they are often unknown, disconnected, and may not be widely available or easily accessible. Health literacy was defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Using a descriptive qualitative design, the purpose of this study was to describe how persons living with dementia and their care partners obtain, understand, and use information to make health decisions to live well with dementia. The convenience sample consisted of 28 care partners and 15 people living with dementia participating in 6 separate focus groups. To illuminate findings, data was analyzed using a hybrid approach (deductive followed by inductive). Four themes emerged deductively as persons gain health literacy in dementia (access, understand, appraise, and understand). The notable finding is the trend at diagnosis where they first are “seeking the expert” ,and as they move from dependence and gain understanding they are “becoming the expert”, and finally as they apply information they are “acting as the expert” for themselves and others. Engaging them in research not only gave them a voice but more importantly it influenced the health information that will be developed and implemented by them. These findings suggest there is a wealth of knowledge to be gained by persons living with dementia and their care partners.

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.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Impact of Social Isolation on People with Dementia and Their Family Caregivers

2021 ◽  
pp. 1-11
Author(s):  
Lílian Viana dos Santos Azevedo ◽  
Ismael Luis Calandri ◽  
Andrea Slachevsky ◽  
Héctor Gastón Graviotto ◽  
Maria Carolina Santos Vieira ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Social Isolation ◽  
Clinical Symptoms ◽  
Memory Function ◽  
South American ◽  
Severe Dementia ◽  
Dementia Caregivers ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Severity Of Dementia

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries.

scholarly journals How Well Do Videos on YouTube Meet Information Needs of ADRD Family Caregivers? A Qualitative Analysis

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 273-274
Author(s):  
Shinyi Wu ◽  
Katherine Foster ◽  
Magaly Ramirez ◽  
Haomiao Jin ◽  
Elizabeth Joe
Keyword(s):  
Family Caregivers ◽  
Selection Criteria ◽  
Information Needs ◽  
Rating Scale ◽  
Healthcare Services ◽  
Community Resources ◽  
Healthcare Organizations ◽  
Term Care ◽  
Community Stakeholders ◽  
Youtube Videos

Abstract Family caregivers need access to information, education, and support for taking care of individuals with Alzheimer’s disease and other dementia (ADRD). As YouTube is increasingly being used for sharing health information, videos regarding the disease and caregiving are becoming an important source of information to support family ADRD caregivers. This study aimed to assess the types and quality of information available on YouTube videos related to ADRD caregiving. A framework categorizing information needs of family ADRD caregivers was developed through a qualitative study with caregivers (N=21) and with healthcare and community stakeholders (N=6). The framework was used to conduct content analysis of YouTube videos. Nineteen categories of information needs were identified, including information about ADRD, healthcare services and treatment, available community resources, caregiving skills, and short- and long-term care. YouTube videos that met the keywords, language, and view selection criteria were evaluated by two coders on a developed rating scale to measure their relevance and helpfulness. A neurologist verified the ratings in 10% of the coded videos for quality assurance. There were 48 English and 23 Spanish videos met the selection criteria. More English (89.6%) than Spanish (56.5%) videos provided tips on handling specific ADRD symptoms. The majority categories of information needs (15 of the 19) were absent in most videos (87.0%, 89.6%). Many of the most watched videos were not rated as helpful. Community-based providers and healthcare organizations are encouraged to make high quality needed information in commonly accessed videos sharing service to support ADRD family caregivers.

Depressive and Anxious Comorbidity and Treatment Response in Family Caregivers of People with Dementia

2021 ◽  
pp. 1-11
Author(s):  
Rosa Romero-Moreno ◽  
María Márquez-González ◽  
Samara Barrera-Caballero ◽  
Carlos Vara-García ◽  
Javier Olazarán ◽  
...  
Keyword(s):  
Depressive Symptoms ◽  
Family Caregivers ◽  
Behavioral Therapy ◽  
Anxiety Symptoms ◽  
Control Group ◽  
People With Dementia ◽  
Acceptance And Commitment ◽  
Randomized Intervention ◽  
Treatment Responses ◽  
Intervention Trials

Background: While most intervention studies conducted with dementia family caregivers have focused on depressive symptoms as the main outcome, no study has analyzed the effects of an intervention on comorbid clinical presentations of depressive and anxious symptomatology. Objective: The aim of this study was to examine the association between clinical depressive and anxious symptomatology at baseline and treatment responses of dementia family caregivers using samples from two randomized intervention trials with the same pre-post design. Methods: Specifically, the effects on depressive and anxious comorbidity of three intervention conditions (Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), and a control group (CG)) were analyzed. Participants were 130 dementia family caregivers. In addition to sociodemographic variables, depressive and anxious symptomatology were measured. Results: Caregivers with clinical depressive and anxiety comorbid symptoms at baseline recovered less well from depressive symptoms after CBT (45.45%) and ACT (47.72%) interventions than caregivers with non-comorbidity (100%recovery in both treatments). No significant association between comorbidity and treatment responses on depression was found for the control group. Regarding anxiety, among participants with comorbidity at baseline, 36.36%of caregivers in CBT and 30.9 %in the ACT group recovered from anxiety symptoms after treatment, compared to 6.45%in the control group. Similar results were obtained regarding those who recovered both from clinical depressive and anxiety symptoms and showed comorbidity at baseline. Conclusion: Caregivers that show comorbid depressive and anxiety symptoms at baseline may benefit less from interventions than caregivers who do not show comorbidity.

scholarly journals Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 152-152
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Primary Reason ◽  
People With Dementia ◽  
High Level ◽  
The Impact ◽  
The Relationship

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

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