A person-centered approach to study intimacy and sexuality in residential care facility (RCF) clients with dementia: Methodological considerations and a guide to study design

Roelofs, Tineke; Embregts, P.J.C.M.

doi:10.3233/nre-172205

Cited by 12 publications

(13 citation statements)

References 30 publications

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“…Another limitation is the fact that in some studies, it was unclear whether perspectives were the actual opinions of persons with dementia or whether (in)formal caregivers thought it might be of importance for persons with dementia. Nowadays, there are research methods and knowledge available about how to ask, observe, or involve persons with dementia themselves instead of asking a proxy [73,74,75]. Since the perspectives of the stakeholders were sometimes different, especially the perspective of informal caregivers, is it important to include persons with dementia themselves to unravel their perspectives on technology use.…”

Section: Discussionmentioning

confidence: 99%

Perspectives of Stakeholders on Technology Use in the Care of Community-Living Older Adults with Dementia: A Systematic Literature Review

Boekel

Wouters

Grimberg³

et al. 2019

Healthcare

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Although technology has the potential to promote aging in place, the use of technology remains scarce among community-living older adults with dementia. A reason might be that many stakeholders are involved who all have a different perspective on technology use (i.e., needs, wishes, attitudes, possibilities, and difficulties). We systematically searched the literature in order to provide an overview of perspectives of different stakeholders on technology use among community-living older adults with dementia. After selection, 46 studies were included. We mainly found perspectives of informal caregivers and, to a lesser extent, of persons with dementia and formal caregivers. Perspectives of suppliers of technology were not present. Shared perspectives among persons with dementia and informal and formal caregivers were, among other things, ease of use, stability and flexibility of technology, importance of privacy, and confidentiality. We also found that among older persons, fun and pleasure, in addition to enhancing freedom and independence, facilitates technology use. Informal caregivers’ peace of mind and relief of burden also appeared to be important in using technologies. Formal caregivers value the potential of technologies to improve monitoring and communication. Insight in shared, and conflicting perspectives of stakeholders are essential to enhance the use of technology.

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Section: Discussionmentioning

confidence: 99%

Perspectives of Stakeholders on Technology Use in the Care of Community-Living Older Adults with Dementia: A Systematic Literature Review

Boekel

Wouters

Grimberg³

et al. 2019

Healthcare

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“…In our research, we always study the perspective of older adults on a specific topic, such as access to long-term care [26,35], technology acceptance [36][37][38][39][40], love, intimacy and sexuality [31,32], and social needs and networks [41][42][43][44]. Although physical or cognitive limitations-including dementia-may complicate this, we showed that it is possible and worthwhile [45]. The scarce number of studies that compare the perspective of older adults with that of proxies, such as loved ones or care professionals, shows that these perspectives differ [46][47][48][49].…”

Section: Perspective Of Older Adultsmentioning

confidence: 99%

“…In some cases, the science-to-practice projects reveal undiscovered research areas and are the start of a new PhD study. For example, the PhD study on love, intimacy, and sexuality [29][30][31][32]45] revealed the perspective of residents and their loved ones on how nursing home residents with dementia, and possibly their partners, can be best supported in their wishes and needs with regard to intimacy and sexuality [53]. To translate the knowledge of this PhD study into daily care practice, the science-to-practice project started with semi-structured interviews with various nursing home professionals to discover their perspective.…”

Section: Science-to-practice Projectsmentioning

confidence: 99%

The Academic Collaborative Center Older Adults: A Description of Co-Creation between Science, Care Practice and Education with the Aim to Contribute to Person-Centered Care for Older Adults

Boekel

Janssen

Verbiest

et al. 2020

IJERPH

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Long-term care for older adults is in transition. Organizations offering long-term care for older adults are expected to provide person-centered care (PCC) in a complex context, with older adults aging in place and participating in society for as long as possible, staff shortages and the slow adoption of technological solutions. To address these challenges, these organizations increasingly use scientific knowledge to evaluate and innovate long-term care. This paper describes how co-creation, in the sense of close, intensive, and equivalent collaboration between science, care practice, and education, is a key factor in the success of improving long-term care for older adults. Such co-creation is central in the Academic Collaborative Center (ACC) Older Adults of Tilburg University. In this ACC, Tilburg University has joined forces with ten organizations that provide care for older adults and CZ zorgkantoor to create both scientific knowledge and societal impact in order to improve the quality of person-centered care for older adults. In the Netherlands, a “zorgkantoor” arranges long-term (residential) care on behalf of the national government. A zorgkantoor makes agreements on cost and quality with care providers and helps people that are in need of care to decide what the best possible option in their situation is. The CZ zorgkantoor arranges the long-term (residential) care in the south and southwest of the Netherlands. This paper describes how we create scientific knowledge to contribute to the knowledge base of PCC for older adults by conducting social scientific research in which the perspectives of older adults are central. Subsequently, we show how we create societal impact by facilitating and stimulating the use of our scientific knowledge in daily care practice. In the closing section, our ambitions for the future are discussed.

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“…Also, during this meeting, the most appropriate way to introduce and explain the content and procedure of the study to the resident with dementia and the adequate consent procedure were discussed (see Figure 1). A more detailed description of the methodology has been published previously (Roelofs, Luijkx, & Embregts, 2017b) A convenience sample of 12 people participated in the study; four individual residents and four couples (Table 1). Three couples were married; one couple, although together for a long time, were not married.…”

Section: Consent 3 and Interviewmentioning

confidence: 99%

“…One researcher (TR) conducted the 30-60 minute duration interviews. A suitable location was discussed and found during the introduction meeting (Roelofs et al, 2017b). In addition to working as a researcher, TR, works as a psychologist in one of the participating RCFs.…”

Section: Data Collection and Analysismentioning

confidence: 99%

Love, Intimacy and Sexuality in Residential Dementia Care: A Client Perspective

Roelofs

Embregts

2019

Clinical Gerontologist

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Objectives: Residential care facility (RCF) residents with dementia are highly dependent on care. This can influence their experience of intimacy and sexuality. The perspective of residents and their spouses with regard to love, intimacy, and sexuality were explored and analyzed. Methods: The study was designed using the IPA methodology. Eight in-depth interviews were held with 12 participants: four couples and four individual residents with dementia. Results: Varied stories were shared; however, dementia had a great impact on all of them. Love, intimacy, and being together were considered fundamentally important by both couples and individual participants, although profound dilemmas were encountered. While only one couple experienced physical sexuality within the RCF, other participants reported that love and being intimate were the most important aspects of their current relationship. Regarding the possibility of fulfilling their needs within the RCF, a secure feeling of privacy was considered to be important, but was absent at the time of the survey. Conclusions: Although challenging to appropriately facilitate at RCFs, love, intimacy, and sexuality are still important aspects for residents with dementia and their spouses. Clinical implications: This study addresses these dilemmas and ads to the normalization of love, intimacy, and sexuality within RCF settings; the findings will hopefully improve the wellbeing of residents with dementia and that of their spouses.

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A person-centered approach to study intimacy and sexuality in residential care facility (RCF) clients with dementia: Methodological considerations and a guide to study design

Abstract: Including the person-centered perspective in research on intimacy and sexuality of RCF residents with dementia, is challenging and takes a flexible and creative approach. It is, however, worthwhile to close the gap in literature.

Cited by 12 publications

References 30 publications

Perspectives of Stakeholders on Technology Use in the Care of Community-Living Older Adults with Dementia: A Systematic Literature Review

Perspectives of Stakeholders on Technology Use in the Care of Community-Living Older Adults with Dementia: A Systematic Literature Review

The Academic Collaborative Center Older Adults: A Description of Co-Creation between Science, Care Practice and Education with the Aim to Contribute to Person-Centered Care for Older Adults

Love, Intimacy and Sexuality in Residential Dementia Care: A Client Perspective

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