Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study
Reilly, Siobhan T.
Self-management for couples with dementia
Rights(c) 2021 The Authors. This is an Open Access article distributed under the Creative Commons CC-BY license (https://creativecommons.org/licenses/by/4.0/)
Open Access statusGold
MetadataShow full item record
AbstractPromoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality. The aim of this study is to investigate the feasibility and acceptability of the DemPower app. A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages. The study was completed by 48% (21/44) of couples where one partner had dementia, of whom 86% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower's utility varied with each couple's lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app. The findings suggest that the DemPower app is a useful resource for couples where one partner has dementia and that the implementation of the app requires the support of memory clinics to reach couples at early diagnosis. ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979.
Citation(2021) Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study. JMIR Aging. 4(4): e16824.
Link to publisher’s versionhttps://doi.org/10.2196/16824
Showing items related by title, author, creator and subject.
Living with dementia during the COVID-19 pandemic: coping and support needs of community-dwelling people with dementia and their family carers. Research findings from the IDEAL COVID-19 Dementia Initiative (IDEAL-CDI)O'Rourke, G.; Pentecost, C.; van den Heuvel, E.; Victor, C.; Quinn, Catherine; Hillman, A.; Litherland, R.; Clare, L. (Older People and Frailty Policy Research Group, 2021-02)We interviewed people with dementia and carers from the IDEAL cohort to find out how the COVID-19 lockdown and continuing restrictions affected those living with dementia. Some people with dementia coped well, while others coped with difficulty or were only just coping. The additional stress of COVID-19 exacerbated pre-existing coping difficulties. For many, social isolation increased anxiety. Some felt that lack of activity or lack of social contact caused a decline in their abilities to manage everyday tasks. Confusion about COVID-19 rules or difficulty remembering what to do led to anxiety when leaving the house. People felt that members of the public might not understand their particular needs. While some carers felt they were coping well, others experienced stress when having to leave the home because the person with dementia might not be safe if left alone. Some experienced increased strain in the caring relationship compounded by an uncertainty about future availability of respite. Some were concerned about the complex health needs of the person with dementia alongside COVID-19 risk and lack of personalised information. Both people with dementia and carers talked about the importance of access to safe outdoor space. People were anxious about how others would react or behave towards them regarding keeping a distance if they went out. Being connected to friends, family and wider community or support groups was important to help combat the effects of isolation. People from BAME communities worried about their increased vulnerability to the virus. A lack of trust in Government guidance and in health care services added to their anxiety. However, some benefitted from strong community and faith group involvement. What might be helpful for people with dementia? • Reablement to help regain or maintain skills • Personalised health advice regarding managing COVID-19 risk and the opportunity to ask questions. • Identification of people with dementia who live alone and an assessment of their needs. What might be helpful for carers? • Needs assessment in regard to respite. • Novel forms of respite care that incorporate social distancing. What might be helpful for both carers and people with dementia? • Access to COVID-safe outdoor spaces. • Continuation and expansion of ‘just checking’ services. • Support to get online and use the internet. • Communication and information through non-digital means. • Community COVID-19 ‘dementia awareness’ initiatives. What might be helpful for people from Black and minority ethnic groups? • Addressing concerns about their increased risk of COVID-19. • Directing information and support through existing community and faith groups.
Optimising person-centred transitions in the dementia journey: A comparison of national dementia strategies.Fortinsky, R.H.; Downs, Murna G. (2014-04)The journey for people with Alzheimer’s disease or another dementia involves the need for increasing levels of support, with transitions across care settings. Although transitional care has received increasing attention in the health care arena, no widely accepted transitions typology exists for the dementia journey. At the same time, national dementia strategies are proliferating. We developed a typology containing six transitions that cover the dementia journey from symptom recognition to end-of-life care. We then critically evaluated whether and how the national dementia strategies of Australia, England, France, the Netherlands, Norway, Scotland, and the United States addressed each transition. Adopting a person-centered perspective, we found that most or all of the national strategies adequately address earlier transitions in the journey, but fewer strategies address the later transitions. We recommend that next-generation national dementia strategies focus on later transitions, specify how care coordination and workforce training should make transitions more person centered, and use person-centered outcomes in evaluating the success of the strategies’ implementation and dissemination.
Measuring the well-being of people with dementia living in formal care settings: the use of Dementia Care Mapping.Innes, C.; Surr, Claire A. (2001)Over the years there have been advances in the quality of care provision for people with dementia. How to measure the impact of care on the person with dementia has challenged researchers as, until recently, no evaluation tool offered a comprehensive overview of the behaviour patterns and well-being of persons with dementia. Dementia Care Mapping (DCM) is a tool used by care practitioners and researchers to capture both the process (behaviours) and outcome (well-being) of care and is therefore of use as a tool to evaluate quality of care. This study aims to assess, through DCM, the experience of dementia care provision in residential and nursing homes in two voluntary organizations in England. The data illustrates similarities in the well-being and behaviour patterns of 76 persons with dementia living in six care settings throughout England. Examples of instances when people with dementia were "put down" and when well-being was enhanced, are outlined. The homes in the study were meeting the physical care but not the broader psychosocial care needs of the observed residents. The action taken by the organizations as a result of the DCM evaluations is summarized.