Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial

Lasrado, Reena; Bielsten, Therése; Hann, Mark; Davies, Linda; Schumm, James; Reilly, Siobhán; Swarbrick, Caroline; Keady, John; Hellström, Ingrid

doi:10.2196/resprot.9087

Cited by 5 publications

(9 citation statements)

References 36 publications

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“…A way of doing this might be to use the CARE intervention on emotional communication as described by Williams et al (). Further, Lasrado et al () suggested a home‐based couple management guide (DemPower) that focused on activities that can be done together as a tool to increasing the sense of togetherness. It is possible that couplehood and togetherness in situations where one partner has dementia may strengthen the sense of person‐centredness for both the person with dementia and the spouse.…”

Section: Discussionmentioning

confidence: 99%

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Swall

Williams

Hammar

2019

Int J Older People Nursing

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Background: Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner.Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple.Aim: The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia. Method:The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis. Findings:One overarching theme arose: Dementia preserved and challenged the value of "us." It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for. Conclusion:Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well-being. Future studies should examine couplehood under differing conditions, such as long-versus short-term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia. Implication for practice: When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit -as an "us" -where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship).

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Section: Discussionmentioning

confidence: 99%

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Swall

Williams

Hammar

2019

Int J Older People Nursing

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“…The detailed inclusion and exclusion criteria for recruitment are listed in Textbox 1 [ 19 ]. The participant characteristics were not limited to types of dementia, comorbidities, sexual orientation, age, profession, or social, cultural, or religious beliefs.…”

Section: Methodsmentioning

confidence: 99%

“…The outcomes of quality of life, self-efficacy, interconnectedness, and mutuality were measured using validated tools for both partners at baseline and postintervention. All outcome measures used in this study are listed in Table 2 [ 19 ]. The tools ranged from 1 to 15 items, with 3- to 5-point Likert scales and response options.…”

Section: Methodsmentioning

confidence: 99%

“…The development of the guide was underpinned by salutogenic, resource-oriented, and strength-based approaches. The theoretical underpinning is discussed in detail in the protocol and DemPower development studies [ 17 , 19 ].…”

Section: Introductionmentioning

confidence: 99%

“…Phase 3 authenticated the findings within expert groups of people with dementia and caregivers in Sweden and the United Kingdom. This phase enabled testing the empirical validity of the themes as sensitizing concepts, the transferability of findings to a UK context, and conversion into an app (for more information on the development phase, refer to the studies by Bielsten et al [ 17 ] and Lasrado et al [ 19 ]).…”

Section: Introductionmentioning

confidence: 99%

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Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study

Lasrado¹,

Bielsten²,

Hann³

et al. 2021

JMIR Aging

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Background Promoting 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. Objective The aim of this study is to investigate the feasibility and acceptability of the DemPower app. Methods 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. Results 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. Conclusions 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. Trial Registration ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979

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Playful, Curious, Creative, Equitable: Exploring Opportunities for AI Technologies with Older Adults

Soubutts,

Singh,

Knowles

et al. 2023

Lecture Notes in Computer Science

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There has recently been much discussion around OpenAI, Generative AI, use of chatbots and the use of other immersive technologies in the mainstream. These developments have much to offer to older adults in terms of playful, accessible and creative ways to engage with technology in everyday life. In this workshop, we are interested in developing a research agenda for HCI research with older adults to explore, enjoy, build new and extend existing interactions with such technologies. What are the possibilities they offer simply for introducing creativity, playfulness, enjoyment and 'fun' for older adults in everyday life? Or are there other goals that older adults want to achieve using them, such as new ways of socially engaging with their grandchildren, developing hobbies and knowledge, or simply making their lives easier? Can these tools empower older adults to explore various interaction modalities to help them achieve their goals? Finally, what are the new ways that these tools can be used to engage with older adults in the research and design of new emerging technologies? In this workshop, we will aim to generate discussion, develop a community and a roadmap for older adults' use of technology that is playful, curious, creative and equitable. We will focus on five themes for the role of such technologies: (i) for enabling expression and creativity, (ii) as a catalyst for experience and action, (iii) for enabling reflection and awareness, (iv) for communication and (v) supporting the design process for (re) inventing new products and avenues for use. This workshop will feature co-creation and exploration of research methods and technologies, with panel and multidisciplinary discussions bringing together researchers who are interested in designing for and with older adults. We will explore new technology interactions including AI and immersive technologies within HCI; discussing methods, opportunities, and challenges in using these technologies and leveraging them for ideation, and form a multidisciplinary community for future synergies and collaborations.

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Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial

Cited by 5 publications

References 36 publications

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study

Playful, Curious, Creative, Equitable: Exploring Opportunities for AI Technologies with Older Adults

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