"A friend during troubled times": Experiences of family caregivers to persons with dementia when receiving professional support via a mobile app.
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ABSTRACT:
SUBMITTER: Dorell A
PROVIDER: S-EPMC9345357 | biostudies-literature | 2022
REPOSITORIES: biostudies-literature
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"A friend during troubled times": Experiences of family caregivers to persons with dementia when receiving professional support via a mobile app.
Dorell Åsa Å Konradsen Hanne H Kallström Ana Paula AP Kabir Zarina Nahar ZN
PloS one 20220802 8
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Project description:BackgroundThe ageing population and the rise of persons with dementia (PWD) living at home have increased the need for support by family caregivers (FC). Research suggests that most FCs are unprepared for the complex role of informal caregiving. The use of mobile applications (apps) provide a cost-effective and efficient opportunity for community-based social care professionals to provide tailor-made support to FCs. The literature indicates that there are limited mobile apps available to meet the needs of the FCs to PWD living at home. The aim of this study was to explore how social care professionals and FCs to PWD living at home experience providing and receiving support through a tailor-made mobile app named STAV.MethodsA qualitative descriptive design was applied. Data were collected through semi-structured interviews with 11 community-based social care professionals and 19 FCs of PWD living at home. The data were analyzed inductively using thematic analysis.ResultsThe social care professionals and the FCs' experience of providing and receiving support through a mobile app was represented by the following themes: Accessibility to support - Bridging the gap, Engaging from a distance, and Limitations of the support.ConclusionsThis study highlights the need for FCs to PWD to receive support that is tailor-made to their needs as caregivers. The findings from this study can help community-based social care providers plan and organize long-distance support for FCs to PWD living at home. The findings further support the use of a mobile app as a complement to traditional means of support for FCs to PWD which can facilitate their knowledge, awareness, and self-care management.
| S-EPMC11202250 | biostudies-literature
Project description:ObjectiveAs the number of individuals diagnosed with dementia increases, so does the need to understand the preferences of persons living with dementia (PLWD) and caregivers for how clinicians can deliver a dementia diagnosis effectively, which can be a difficult process. This study describes the diagnostic communication preferences of PLWD and caregivers.MethodsWe conducted semi-structured individual phone interviews with two groups: PLWD who were diagnosed in the past two years (n = 11) and family caregivers of PLWD (n = 19) living in Florida. PLWD and caregivers were not recruited/enrolled as dyads.ResultsThe groups' communication preferences were largely similar. Data were analyzed thematically into five themes: communicate the diagnosis clearly, meet information needs, discuss PLWD/caregiver resources, prepare for continued care, and communicate to establish and maintain relationships.ConclusionParticipants wanted clear communication, information, and support, but differed in some details (e.g. the language used to describe the diagnosis and the amount/type of desired information). Clinicians can apply general principles but will need to tailor them to individual preferences of PLWD and caregivers.InnovationLimited research has elicited PLWD and caregivers' communication preferences for receiving dementia diagnoses, particularly through an individualized data collection method allowing for richer descriptions and deeper understanding.
| S-EPMC10828581 | biostudies-literature
Project description:BACKGROUND:Globally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia. METHODS:Using a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app. DISCUSSION:This tailor-made mobile app has the high potential to be a practical platform for supporting FCs to alleviate stress and improve mental health irrespective of distance to the nearest health care or social service center. TRIAL REGISTRATION:ISRCTN, ISRCTN46137262 . Registered 10 October 2019.
| S-EPMC7449058 | biostudies-literature
Project description:In recent years, there has been a rapid increase in technology use in dementia caregiving, particularly the use of mobile applications (apps) which are highly accessible, cost-effective and intuitive. Yet, little is known about the experiences of family caregivers of persons living with dementia who use apps to support caregiving activities. This is of particular concern given that limited understandings of the user experience in designing technology have often led to end-users experiencing barriers in technology adoption and use. Using a qualitative descriptive approach, the purpose of the study was to explore the experiences of family caregivers of persons living with dementia on using apps in their caregiving roles. A purposive sample of five family caregivers in Ontario, Canada participated in two interviews each, with the second interview informed by photo-elicitation methods. Thematic analysis of the collected data revealed a central overarching theme, Connecting to support through apps in my, your and our lives, which explicated how apps played an important role in the lives of the caregiver, the care recipient and both together as a dyad. Three core themes also emerged: Adapting apps to meet individual needs of the dyad, Minimising the impact of the condition on the person and the family and Determining the effectiveness of apps. The findings highlighted that the value of apps extends beyond their mere functionality and their ability to help with care provision as they are also able to promote richer interpersonal connections, enhance personhood and sustain family routines. This research advances our understanding of the impact of app use in caregiving and provides direction for future research, policy, education, practice and app development.
| S-EPMC9237854 | biostudies-literature
Project description:The prevalence of persons living with dementia and at risk of going missing is rising. In this study, we engaged persons living with dementia, care partners, police services, search and rescue organizations, and health and social service providers to develop Community ASAP, a mobile alert system that engages community citizens, as volunteers, to look out for persons with dementia reported missing. We completed three phases of development and evaluation of the usability and functionality of the alert system with stakeholders in three Canadian provinces. In this paper we describe features of the Community ASAP and the findings of these evaluation phases.
| S-EPMC8289012 | biostudies-literature
Project description:BackgroundThis paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia.MethodsIn the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law) and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly) and support needs on the other hand.ResultsAlmost all informal caregivers (92.6%) received some professional support. However, two thirds (67.4%) indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law): spouses relatively often need emotional support and sons or daughters (in-law) more often need information and coordination of dementia care.ConclusionsMost of the informal caregivers report that they need additional information and advice, e.g. about how to cope with behavioral problems of their relative, about the progression of the illness trajectory, emotional support and coordination of dementia care. Future support programmes, e.g. in the field of case management, should address the specific needs of informal caregivers.
| S-EPMC2901350 | biostudies-literature
Project description:Objectives: While ways to reduce caregiver burden have dominated dementia care research, there is little understanding of daily communication and its relationship to caregiver burden and depression. In this study, we sought to: (1) describe the frequency of harsh communication used by caregivers; (2) examine the relationship between harsh communication, caregiver and person with dementia characteristics; and (3) determine the contributions of caregiver depression and burden on such communication.Method: Cross-sectional baseline data were drawn from 250 dyads, who participated in the Dementia Behavior Study (NCT01892579). Hierarchical linear regression models were used to examine the relationship between dyad characteristics and harsh communication scores (using the 6-item Negative Communication Scale), controlling for three groups of covariates: sociodemographic, relationship characteristics and health factors.Results: More than half of the caregivers (mean age = 65.4, 81.2% women, 45.6% spouses) reported they felt like screaming/yelling (N = 138, 55.2%) or used a harsh tone (N = 129, 51.6%) at persons with dementia (Mini Mental Status Examination mean = 14.3, SD: 7.8) at least sometimes. When controlling for all covariates, for each unit increase in caregiver burden, harsh communication increased by 0.486 units (p < 0.001); similarly, for each unit increase in caregiver depression, harsh communication increased by 0.301units (p < 0.001).Conclusion: Over half of dementia caregivers reported they felt like or used one or more harsh forms of communication. Caregiver burden and depression were incrementally associated with greater use of negative communication. Providing caregivers with knowledge, support and specific communication skills may lessen the frequency of harsh communication and possibly reduce burden and depression.
| S-EPMC7089818 | biostudies-literature
Project description:ObjectivesTo compare the efficacy of Preventing Aggression in Veterans with Dementia (PAVeD) with that of usual care in decreasing incidence of aggression (primary outcome) and pain and improving depression, pleasant events, caregiver burden, and patient-caregiver relationship quality (secondary outcomes).DesignRandomized controlled trial with assessments at baseline and 3, 6, 9, and 12 months SETTING: Houston, TX.ParticipantsA total of 203 community-dwelling veterans with pain and dementia and their caregivers.InterventionPAVeD, 6 to 8 weekly sessions of 45-minute home visits with masters-level clinicians providing instruction to caregivers on recognizing pain, enhancing communication, and making daily activities pleasant and enjoyable, and at least two elective sessions.MeasurementsCohen-Mansfield Agitation Inventory (primary outcome), Philadelphia Geriatric Pain Intensity Scale, Geriatric Depression Scale, Pleasant Events Schedule-AD, Burden Interview, Mutuality Scale (secondary outcomes), Client Satisfaction Questionnaire.ResultsThere were no significant differences in aggression incidence between intervention and control groups, although the PAVeD group had significantly better mutuality than controls.ConclusionsPAVeD may need to address a broader range and more in-depth coverage of aggression risk factors with person-centered tailoring to target certain types of distress. Interventions to prevent aggression may also need to address medical providers in addition to caregivers.
| S-EPMC5122463 | biostudies-literature
Project description:ObjectiveResearchers have consistently shown that providing care in a gradually deteriorating situation, such as dementia, can be stressful and detrimental to the caregiver's (CG) health. Although stressor appraisal is important in understanding variability in CG outcomes, the role of personal mastery, a coping resource, in shaping CG's health outcomes has not been considered. The primary goal of this paper was to determine whether personal mastery is associated with a survival advantage for spousal CGs of persons with dementia.MethodsThis study assessed the association of CG burden and personal mastery with longevity over a 10-year period in 71 spousal CGs of persons initially diagnosed with mild cognitive impairment.ResultsOver the 10 years, 16 of 71 CGs (23%) died. Cox regression models with right censoring of CGs' time to death showed that after adjusting for the health of family CG, spousal CGs who reported high levels of burden had an 83% reduced risk of death when they also reported high personal mastery (hazard ratio [HR] = 0.17, 95% confidence interval [CI] 0.04, 0.65).ConclusionsFindings have implications for support programs that help build personal mastery.
| S-EPMC7424271 | biostudies-literature
Project description:IntroductionUnderrepresented groups experience health disparities and a history of exploitation by researchers and the health-care system that may contribute to distrust of new treatments and technologies. This study aims to understand how diverse family caregivers and health-care professionals view the benefits and risks of precision medicine as well as cultural dimensions to consider when developing and implementing precision medicine interventions in dementia care.MethodsEight focus group sessions and one individual interview were conducted over a 6-month period. Fifty-four focus group participants included African-American, American Indian, rural Caucasian, Latino, and West African caregivers and health professionals. The majority of participants were female (73%) and were of Hispanic/Latino ethnicity (68%). About a third of participants identified their race as white. Participants were presented with four hypothetical scenarios related to precision medicine diagnostic and treatment approaches in dementia care: (1) genetic testing for dementia risk, (2) health-care informatics to determine individualized medication dosages based on health and family history, (3) a smartphone application providing dementia caregiving tips, and (4) remote activity monitoring technology in the home. Focus groups' responses were coded using thematic analysis.ResultsParticipants indicated skepticism regarding the use of precision medicine in their communities. Concerns included cost of precision medicine and insurance coverage; lack of alignment with cultural norms; fraught relationships between communities, health professionals, and researchers; data ownership and privacy; and the trade-off between knowing risk and treatment benefit.DiscussionEstablishing relationships with underserved communities is crucial to advancing precision medicine in dementia care. Appropriate engagement with diverse racial, ethnic, and geographic communities may require significant investment but is necessary to deliver precision medicine effectively.
| S-EPMC6744595 | biostudies-literature