scholarly journals Technology-Driven Dyadic Interaction Support for Community-Dwelling People With Dementia and Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-589
Author(s):  
Karin Wolf-Ostermann ◽  
Lars Steinert ◽  
Tanja Shultz ◽  
Viktoria Hoel
Keyword(s):  
Family Caregivers ◽  
Cognitive Abilities ◽  
Community Dwelling ◽  
Dyadic Interaction ◽  
Structured Interviews ◽  
Joint Activities ◽  
People With Dementia ◽  
Intervention Community ◽  
The Impact

Abstract People with dementia and their family caregivers struggling with the impacts of the condition on cognitive abilities, experience deterred social interactions and strained relationships. Technology can potentially sustain the relationship by engaging dyads in joint activities and supporting their interaction. This study aimed to evaluate the impact of a tablet-based activation system, I-CARE, specifically designed to engage people with dementia in meaningful activities. In this intervention, community-dwelling people with dementia and their family caregiver engaged in joint activities supported by the I-CARE system. Quantitative measures on quality of life, relationship quality and caregiver burden are collected, while semi-structured interviews explore the impact of Covid-19, as well as what motivates the participants to invite technology into their dyadic interactions. Our findings provide important insight in how technology can support social health and relationship sustenance of dyads living with dementia, and what implications Covid-19 has for their social participation in society.

scholarly journals Responses and Interventions to Delusions Experienced by Community-Dwelling Older Persons With Dementia

2021 ◽  
pp. 089198872110429
Author(s):  
Jiska Cohen-Mansfield ◽  
Hava Golander
Keyword(s):  
Family Caregivers ◽  
Relative Frequency ◽  
Older Persons ◽  
Community Setting ◽  
Community Dwelling ◽  
Structured Interviews ◽  
Guidance Programs ◽  
The Impact ◽  
Qualitative Analyses

We examined how family caregivers react, and what interventions they use in response to delusions exhibited by relatives with dementia in a community setting. Structured interviews were conducted with 68 family caregivers whose relatives were described as experiencing delusions based on the BEHAVE-AD or the NPI. Quantitatively, we cross-tabulated the type of response to delusion by the type of person providing the response and by the type of delusion manifested. Qualitatively, we analyzed open-ended responses to understand the types of caregivers’ responses to delusions, the contextual circumstances, and the impact of the responses. Caregiver responses to delusions included “Explaining that the delusion was wrong” (34% of responses), “Trying to calm down” (27%), “Agreeing with the delusion” (13%), “Distracting” (12%), and “Ignoring” (10%). Responses including “Anger, yelling or scolding,” were rare. The vast majority of reactions were by family caregivers of the persons with dementia. The relative frequency of the type of reaction tended to be consistent across delusion types. The qualitative analyses added some categories of reactions, but mostly highlighted issues to be considered when examining responses and their efficacy, including the use of multiple responses, and the manner and mood in which responses are conveyed. To cope with delusions, family caregivers develop intuitive intervention techniques. Understanding those interventions and reactions by caregivers and their relative efficacy can inform guidance programs for family caregivers. Improved support for family caregivers has the potential to positively influence the behavior of caregivers and older adults with dementia and improve their respective quality of life.

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 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.

“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

2017 ◽  
Vol 29 (5) ◽  
pp. 765-776 ◽  
Author(s):  
Ashley Macleod ◽  
Gemma Tatangelo ◽  
Marita McCabe ◽  
Emily You
Keyword(s):  
Family Caregivers ◽  
Service Use ◽  
Care Service ◽  
Aged Care ◽  
Community Dwelling ◽  
Barriers And Facilitators ◽  
Care Recipient ◽  
Structured Interviews ◽  
Good Communication ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

scholarly journals How Do Family Caregivers’ Values Influence Pain Management for Older Adults with Dementia?

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 949-949
Author(s):  
Hui Zhao ◽  
Pamela Kulbok ◽  
Ishan Williams ◽  
Carol Manning ◽  
Rafael Romo
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Pain Management ◽  
Family Caregivers ◽  
Personal Values ◽  
Alternative Therapy ◽  
Community Dwelling ◽  
Structured Interviews ◽  
Dementia Patients

Abstract Professional caregivers rely on formal training when managing pain among patients with dementia, but family caregivers (FCGs) lack this foundation. Instead, FCGs use informal sources that may reflect a values-driven decision-making process. Few studies have examined how FGCs’ personal values impact pain management for dementia patients. We sought to examine the influence of personal values on pain management among FCGs for community-dwelling older adults with dementia using qualitative descriptive methods. Twenty-five adult FCGs, aged from 29 to 95, were recruited in central Virginia. Participants were predominantly white, married, female, and high school graduates. We conducted semi-structured interviews that were audio recorded and analyzed using constant comparative analysis. Four themes emerged: 1) Priority for pain management: when quality of life is valued over other factors (i.e., length of life), priorities focused on no pain, leading to better pain management; 2) Moral perspectives: negative views toward drugs, especially opioids, led to less use and greater report of pain; 3) Beliefs about alternative therapy: negative views led to less likely use of non-traditional approaches and reports of more pain, and 4) Personal experience of pain: past personal experiences of pain (negative or positive) influenced the priority placed on pain management and the FCG’s ability to provide effective pain management. The diverse views held by FCGs demonstrate a value-based process and suggest a modifiable factor in pain management. Helping FCGs reflect biases while reinforcing values that improve pain management would lead to improve pain and quality of life for older adults with dementia.

scholarly journals The challenge of pain identification, assessment, and management in people with dementia: a qualitative study

BJGP Open ◽  
2020 ◽  
Vol 4 (2) ◽  
pp. bjgpopen20X101040
Author(s):  
Laurna Bullock ◽  
Carolyn A Chew-Graham ◽  
John Bedson ◽  
Bernadette Bartlam ◽  
Paul Campbell
Keyword(s):  
Pain Management ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Old Age ◽  
Community Services ◽  
Community Dwelling ◽  
Assessment Tools ◽  
Structured Interviews ◽  
People With Dementia ◽  
Management Plans

BackgroundPainful conditions are common in older adults, including people with dementia. The symptoms associated with dementia (for example, diminished language capacity, memory impairment, and behavioural changes), however, may lead to the suboptimal identification, assessment, and management of pain. Research has yet to qualitatively explore pain management for community-dwelling people with dementia.AimTo explore pain identification, assessment, and management for community-dwelling people with dementia.Design & settingA qualitative study was undertaken, set in England.MethodSemi-structured interviews took place with people with dementia, family caregivers, GPs, and old-age psychiatrists. Data were analysed thematically.ResultsInterviews were conducted with eight people with dementia, nine family caregivers, nine GPs, and five old-age psychiatrists. Three themes were identified that related to pain identification and assessment: gathering information to identify pain; the importance of knowing the person; and the use of pain assessment tools. A further three themes were identified that related to pain management: non-drug strategies; concerns related to analgesic medications; and responsibility of the caregiver to manage pain.ConclusionIdentifying and assessing the pain experienced by people with dementia was challenging. Most people with dementia, family caregivers, and healthcare professionals supported non-drug strategies to manage pain. The minimal concerns associated with non-drug strategies contrasted the multifactorial concerns associated with analgesic treatment for people with dementia. Given the complexity of pain identification, assessment, and management, primary care should work together with family caregivers and community services, with case finding for pain being considered in all assessment and management plans.

scholarly journals Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 154-155
Author(s):  
Melissa Harris ◽  
Marita Titler
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Community Services ◽  
Community Dwelling ◽  
Care Recipient ◽  
Future Research ◽  
Service Access ◽  
Psychological Responses ◽  
People With Dementia ◽  
The Impact

Abstract Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

Implementation and impact of unforgettable: an interactive art program for people with dementia and their caregivers

2018 ◽  
Vol 31 (3) ◽  
pp. 351-362 ◽  
Author(s):  
Iris Hendriks ◽  
Franka J. M. Meiland ◽  
Debby L. Gerritsen ◽  
Rose-Marie Dröes
Keyword(s):  
Quality Of Life ◽  
Implementation Process ◽  
Successful Implementation ◽  
Interactive Art ◽  
Structured Interviews ◽  
Positive Attitudes ◽  
People With Dementia ◽  
Museum Staff ◽  
The Impact

ABSTRACTBackground:Previous research shows that museum programs can be beneficial for the quality of life of people with dementia. This study evaluated the implementation of “Unforgettable,” an interactive museum program for people with dementia and their caregivers in the Netherlands, and investigated the impact of the program's implementation on the museums as an organization and on the attitudes toward dementia of the museum staff.Method:Semi-structured interviews were held with 23 stakeholders to identify facilitators and barriers to the implementation of the Unforgettable program in 12 Dutch museums. Based on the model of Meiland et al. (2004), an overview is made of factors influencing the different levels and phases of the implementation process. The impact of Unforgettable on the attitudes of the museum staff was assessed using the Approaches to Dementia Questionnaire (n = 176).Results:The training in the Unforgettable method, regular evaluation with the program guides and hosts, and cooperation with other organizations appeared essential for successful implementation of Unforgettable. A lack of promotional activities was an impeding factor. Compared to before the implementation, the museum employees’ attitudes toward people with dementia became more positive.Conclusion:Both successful dissemination of the Unforgettable program and the more positive attitudes toward dementia of employees in museums implementing this program can contribute to the social participation of people with dementia and thereby to their quality of life.

scholarly journals The impact of COVID-19 on the lives of community- dwelling people with dementia and informal carers in the context of using the social and medical services – a qualitative study

2021 ◽  
Author(s):  
Maria Maćkowiak ◽  
Adrianna Senczyszyn ◽  
Katarzyna Lion ◽  
Elżbieta Trypka ◽  
Monika Małecka ◽  
...  
Keyword(s):  
Social Support ◽  
Well Being ◽  
Community Dwelling ◽  
Medical Services ◽  
Structured Interviews ◽  
Team Members ◽  
Qualitative Thematic Analysis ◽  
People With Dementia ◽  
Informal Carers ◽  
The Impact

Abstract Background: Older people with dementia are particularly at risk of COVID-19, whilst still little is known about the indirect impact of the Pandemic on the lives of those living with and caring for someone with dementia. The aim of this study was to investigate the impact of the Pandemic on the lives of people with dementia and their informal carers in the context of using social and medical services in Poland. Methods: A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed. Interviews were collected between June and August 2020 via phone after the first wave of COVID-19 in Poland. Data were analysed using NVivo software by four team members. Results: Three overarching themes emerged: (1) Care re-organization; (2) Psychological responses; (3) Emerging needs. The factor underlying all these elements were a reliance on other people. Regardless of the type of support (informal or formal), a sense of presence of others and maintaining mutual contacts displayed as crucial elements influencing the well-being of people with dementia and informal carers. Conclusions: Social support and engagement are vital to the ongoing health and wellbeing of people living with dementia and their informal carers. Services need sustaining to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Within the post-pandemic environment people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their need.

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.

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