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 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 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 “We Are Doing These Things So That People Will Not Laugh at Us”: Caregivers’ Attitudes About Dementia and Caregiving in Nigeria

2021 ◽  
pp. 104973232110041
Author(s):  
Candidus C. Nwakasi ◽  
Kate de Medeiros ◽  
Foluke S. Bosun-Arije
Keyword(s):  
The United States ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Awareness Campaigns ◽  
Knowledge Deficit ◽  
People With Dementia ◽  
Qualitative Descriptive ◽  
The Impact

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.

Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients

2021 ◽  
pp. 1-8
Author(s):  
Felicity Moon ◽  
David W. Kissane ◽  
Fiona McDermott
Keyword(s):  
End Of Life ◽  
General Medicine ◽  
Terminal Condition ◽  
Life Transitions ◽  
Social Constructionist ◽  
Structured Interviews ◽  
Loved One ◽  
Life Trajectories ◽  
People With Dementia ◽  
Illness Progression

Abstract Background Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions. Context The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death. Methods Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life. Results Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase. Significance of results Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.

Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

2019 ◽  
Vol 33 (9) ◽  
pp. 1166-1175 ◽  
Author(s):  
Romy Van Rickstal ◽  
Aline De Vleminck ◽  
Melissa D Aldridge ◽  
Sean R Morrison ◽  
Raymond T Koopmans ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Advance Care Planning ◽  
Quality Care ◽  
Third Party ◽  
Care Planning ◽  
Structured Interviews ◽  
Young Onset ◽  
People With Dementia ◽  
Advance Care ◽  
Young Onset Dementia

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers’ preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews ( n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants’ limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients’ cognitive competence. However, endorsement for advance care planning showed from respondents’ preferences that it should be initiated timely, by a third party, and emphasize patients’ remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

scholarly journals DEMENTIA CAREGIVER EMBRACE OF HOME VIDEO TELEHEALTH VISITS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S243-S243
Author(s):  
Lauren Moo
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Daily Routine ◽  
Dementia Caregivers ◽  
Home Video ◽  
Inclement Weather ◽  
Medical Visits ◽  
Dementia Caregiver ◽  
People With Dementia ◽  
Technical Issues

Abstract Bringing people with dementia to in-person medical visits can be logistically challenging for family caregivers, especially when they themselves are older adults with their own health or mobility challenges, when they live far from the clinic, or when they have to combat inclement weather. Our dementia management clinic has successfully trialed video visits into the home. Video sessions have been welcomed by many dementia caregivers citing reduced travel and less disruption of daily routine as the primary benefits of participating. Caregivers report equivalent visit satisfaction compared to in-person visits. While technical issues have been common, most were just brief audio or video lags. Expansion of HIPAA compliant telemedicine software options across devices is increasing the population of caregivers who are able to participate in home video visits. (127 words)

Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study

2019 ◽  
Vol 32 (2) ◽  
pp. 255-265
Author(s):  
Mayumi Nishimura ◽  
Ayako Kohno ◽  
Jenny T. van der Steen ◽  
Toru Naganuma ◽  
Takeo Nakayama
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
Life Experience ◽  
Central Position ◽  
Structured Interviews ◽  
Cultural Backgrounds ◽  
Term Care ◽  
Family Structures ◽  
People With Dementia

ABSTRACTObjectives:To conceptualize a “good end of life” for people with dementia from the perspectives of bereaved family caregivers in Japan.Design and participants:A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.Results:From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a “Peaceful Death” while “Maintaining Personhood” at a “Preferred Place” allowing for feelings of “Life Satisfaction.” A “Preferred Place” emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, “Maintaining Personhood.” However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a “Preferred Place.”Conclusions:Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.TRIAL REGISTRATION NUMBEREthics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2)

“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 Self-appraisal of caregiving in family caregivers of older adults with dementia in Iran: a content analysis study

2019 ◽  
Author(s):  
Akram Farhadi ◽  
Farahnaz Mohammadi ◽  
Mahshid Foroughan ◽  
Leila Sadeghmoghadam ◽  
Shima Nazari ◽  
...  
Keyword(s):  
Content Analysis ◽  
Family Caregivers ◽  
Personal Growth ◽  
Qualitative Content Analysis ◽  
The Elderly ◽  
Analysis Data ◽  
Structured Interviews ◽  
People With Dementia ◽  
Perceived Burden ◽  
The Family

Abstract Background The concept of caring appraisal, which includes positive and negative aspects of care, has been considered as one of the key concepts in caregivers' studies. The aim of the present study was to investigate the self-appraisal concept of caring from the viewpoint of family caregivers in the elderly with dementia in Iran.Methods This study was based on qualitative analysis. Data were collected through in-depth and semi-structured interviews. Twelve participants (family caregivers of elderly people with dementia) were interviewed between January and September 2016. They were selected from visitors to the Alzheimer's Association of Iran and Yadman Memorial Clinic (Tehran- Iran). The interviews were recorded and transcribed. The transcribed texts were analyzed using inductive qualitative content analysis recommended by Graneheim and Lundman (2004).Results The study explored two main categories include "perceived burden", "Losses and Threats," "satisfaction with care", "Personal growth", "caregiving gains", "philosophy of care" and 22 subcategories.Conclusion According to the results of this study, the family caregivers’ appraisal of their care not only does not have negative aspects but also covers a large number of positive aspects, in which the cultural and social conditions prevailing in the Iranian society play a significant role in the formation of these positive aspects.

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.

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