“We Don't Feel so Alone”: A Qualitative Study of Virtual Memory Cafés to Support Social Connectedness Among Individuals Living With Dementia and Care Partners During COVID-19

Introduction: Loneliness and low social support can be detrimental to the health of individuals living with Alzheimer's and related dementias (ADRD) and family care partners. Restrictions on gatherings to prevent the spread of COVID-19 create an even greater risk for social isolation. Memory Cafés are a highly replicated program that provide individuals living with ADRD and care partners an opportunity to socialize in an inclusive and supportive environment without fear of judgment, pressure, or stigma. Following restrictions on in-person gatherings, virtual Memory Cafés offer regular social engagement opportunities in an online format. While the Memory Café model has been replicated globally, their effects on loneliness and perceived social support are generally unknown. Even less is known about their impact when operating in a virtual environment.Methods: Semi-structured interviews in Spanish and English were conducted with individuals living with dementia and family care partners who regularly attend Memory Cafés hosted by partners in a Texas Memory Café Network. Interviews took place online using video conferencing software, were transcribed, then analyzed for common themes using a combined inductive and deductive approach.Results: A total of 17 interviews were conducted with persons living with dementia (n = 5) and family care partners (n = 12) who attend Memory Cafés to learn about their perceived experiences of social connectedness since COVID-19. Care partners included spouses (n = 8) and adult children (n = 4). Interviews included attendees of different Memory Café models, including in-person only (n = 2), virtual only (n = 9), and those who attend both models (n = 6). Five key themes were identified: (1) Reprieve; (2) What is still possible; (3) Connectedness; (4) Inclusivity; and (5) Value added, with ten sub-themes supporting these main themes.Discussion: Findings substantiate evidence that Memory Cafés offer important benefits for families living with dementia, providing vital new insight into the potential for virtual Memory Cafés to offer similar benefits. Findings have implications beyond the context of COVID-19, where virtual models may support the social connectedness of those living in geographically marginalized and underserved areas. Virtual models may not address the needs of all families experiencing dementia due to lack of access to technology and limitations for virtual engagement with those experiencing later stage dementia.

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A qualitative evaluation of the impact of a Good Life Club on people living with dementia and care partners

Dementia ◽

10.1177/1471301221998897 ◽

2021 ◽

pp. 147130122199889

Author(s):

Lydia Morris ◽

Anthea Innes ◽

Sarah Smith ◽

Jack Wilson ◽

Sophie Bushell ◽

...

Keyword(s):

Social Life ◽

Social Connectedness ◽

Good Life ◽

Qualitative Evaluation ◽

Well Being ◽

Structured Interviews ◽

People With Dementia ◽

Care Partners ◽

Set Up ◽

The Impact

Background Research suggests there is a lack of post-diagnostic support to enable people living with dementia to fulfil social and active lives throughout their dementia journey. Gardening has been found to have many benefits for people living with dementia. Although such research is important, most research frames people with dementia as passive recipients of stimulation. Research into the impact of a community-based gardening group, where people living with dementia are active in the development of an outdoor space, is underdeveloped. Knowledge about the impact of participating in such groups is also sparse. The Good Life Club (GLC) was co-developed and evaluated to respond to these gaps. Objectives The primary aim of this article is to present the findings regarding the impact of attending the GLC on the self-reported well-being for people living with dementia and care partners. Methods Qualitative data were collected via 22 semi-structured interviews. Fourteen interviews were conducted before the GLC and eight after the GLC. Thematic analysis was used to analyse data. Dementia Care Mapping data were collected to supplement the interview data. Findings Four key themes were identified. The first was that participants considered having active participation in social life to be a key aspect of living a good life. The second was that the way that the GLC was set up and delivered gave the participants ownership of the GLC and within this they felt able to contribute. The third was the importance of social connectedness and peer support to the well-being of both people living with dementia and care partners. Fourth, positive mood and well-being was directly experienced through gardening. Conclusions The combination of long-term investment of time and energy to the GLC, ongoing friendships and in-session autonomy act as key ingredients in creating a group that is relaxed, full of humour and highly valued.

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Strategies to support engagement and continuity of activity during mealtimes for families living with dementia; a qualitative study

10.32920/14636988.v1 ◽

2021 ◽

Author(s):

Heather H. Keller ◽

Lori Schindel Martin ◽

Sherry Dupuis ◽

Holly Reimer ◽

Rebecca Genoe

Keyword(s):

Qualitative Study ◽

Social Engagement ◽

Family Care ◽

Further Education ◽

Older Person ◽

Care Partners ◽

The Moment ◽

Person With Dementia ◽

Family Mealtimes

Background Mealtimes are an essential part of living and quality of life for everyone, including persons living with dementia. A longitudinal qualitative study provided understanding of the meaning of mealtimes for persons with dementia and their family care partners. Strategies were specifically described by families to support meaningful mealtimes. The purpose of this manuscript is to describe the strategies devised and used by these families living with dementia. Methods A longitudinal qualitative study was undertaken to explore the meaning and experience of mealtimes for families living with dementia over a three-year period. 27 families [older person with dementia and at least one family care partner] were originally recruited from the community of South-Western Ontario. Individual and dyad interviews were conducted each year. Digitally recorded transcripts were analyzed using grounded theory methodology. Strategies were identified and categorized. Results Strategies to support quality mealtimes were devised by families as they adapted to their evolving lives. General strategies such as living in the moment, as well as strategies specific to maintaining social engagement and continuity of mealtime activities were reported. Conclusions In addition to nutritional benefit, family mealtimes provide important opportunities for persons with dementia and their family care partners to socially engage and continue meaningful roles. Strategies identified by participants provide a basis for further education and support to families living with dementia.

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Engagement with a diverse Stakeholder Advisory Council for research in dementia care

Research Involvement and Engagement ◽

10.1186/s40900-021-00297-8 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Sara S. Masoud ◽

Ashlie A. Glassner ◽

Neela Patel ◽

Mayra Mendoza ◽

Deborah James ◽

...

Keyword(s):

Stakeholder Engagement ◽

Social Care ◽

Family Care ◽

Research Process ◽

Dementia Care ◽

Advisory Council ◽

Structured Interviews ◽

Care Research ◽

Care Partners ◽

Health And Social Care

Abstract Background The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. Methods To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. Results Interviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. Conclusions Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

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Engagement with a Diverse Stakeholder Advisory Council for Research in Dementia Care

10.21203/rs.3.rs-300254/v1 ◽

2021 ◽

Author(s):

Sara Suzanne Masoud ◽

Ashlie A. Glassner ◽

Neela Patel ◽

Mayra Mendoza ◽

Deborah James ◽

...

Keyword(s):

Stakeholder Engagement ◽

Social Care ◽

Family Care ◽

Research Process ◽

Dementia Care ◽

Advisory Council ◽

Structured Interviews ◽

Care Research ◽

Care Partners ◽

Health And Social Care

Abstract Background The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. Methods To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. Results Interviews (N=11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n=2); family care partners (n=4), and health and social care professionals in dementia care (n=5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. Conclusions Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

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Strategies to support engagement and continuity of activity during mealtimes for families living with dementia; a qualitative study

10.32920/14636988 ◽

2021 ◽

Author(s):

Heather H. Keller ◽

Lori Schindel Martin ◽

Sherry Dupuis ◽

Holly Reimer ◽

Rebecca Genoe

Keyword(s):

Qualitative Study ◽

Social Engagement ◽

Family Care ◽

Further Education ◽

Older Person ◽

Care Partners ◽

The Moment ◽

Person With Dementia ◽

Family Mealtimes

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Coaching Care Partners Who Support Loved Ones With MCI

Perspectives on Gerontology ◽

10.1044/gero19.2.50 ◽

2014 ◽

Vol 19 (2) ◽

pp. 50-56 ◽

Cited By ~ 1

Author(s):

Kerry Mills ◽

Jennifer Brush

Keyword(s):

Cognitive Functioning ◽

Educational Program ◽

Social Withdrawal ◽

Quality Care ◽

Critical Role ◽

Family Care ◽

Speech Language Pathologists ◽

Care Partners ◽

Provide Quality Care ◽

Solution Focused

Speech-language pathologists can play a critical role in providing education and intervention to prevent social withdrawal, prevent premature disability, and maximize cognitive functioning in persons with MCI. The purpose of this article is to describe positive, solution-focused educational program that speech-language pathologists can implement with family care partners to improve relationships and provide quality care for someone living with MCI.

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STUDI KUALITATIF : KEBUTUHAN IBU HAMIL DENGAN DIABETES MELITUS GESTASIONAL DI KABUPATEN KARANGANYAR JAWA TENGAH

Jurnal Kesehatan Kusuma Husada ◽

10.34035/jk.v12i1.476 ◽

2020 ◽

pp. 17-26

Author(s):

Arista Apriani ◽

M Mufdlilah ◽

Menik Sri Daryanti

Keyword(s):

Social Support ◽

Pregnant Women ◽

Health Center ◽

Blood Sugar ◽

Interpretative Phenomenological Analysis ◽

Health Workers ◽

Phenomenological Analysis ◽

Lifestyle Changes ◽

Structured Interviews ◽

Diabetes Melitus

ABSTRAK GDM dapat berpotensi menimbulkan komplikasi serius yang dapat mengakibatkan risiko kesehatan jangka pendek dan jangka panjang bagi ibu dan bayinya. diagnosis GDM menimbulkan efek emosional yang negatif. Persepsi ibu hamil tentang GDM dapat memengaruhi perubahan gaya hidup. Garis pertama penatalaksanaan DMG yaitu dengan perubahan gaya hidup. Tujuan menggali secara mendalam kebutuhan ibu dengan diagnosis diabetes melitus gestasional. Metode penelitian kualitatif dengan pendekatan fenomenologi. Lokasi di Kabupaten Karanganyar yaitu Puskesmas Jaten I, Puskesmas Matesih dan RSUD Kabupaten Karanganyar, pada bulan Oktober 2019 - Januari 2020. Sampel secara criterion sampling Pengumpulan data dengan semistructure interview dengan one on one interview. Uji Keabsahan Data dengan Credibility pada penelitian ini menggunakan strategi validitas triangulasi, Tranferability, Dependability, Confirmability. Analisis data dengan Interpretative Phenomenological Analysis (IPA). Hasil penelitian kebutuhan ibu hamil dengan DMG teridentifikasi empat tema, yaitu dukungan keluarga dalam hal mengontrol pola makan, mengatarkan periksa ke tenaga kesehatan, dan mengingatkan untuk aktifitas olah raga. Dukungan sosial, yaitu cara mengontrol gula darah. Dukungan tenaga kesehatan, yaitu saran dan motivasi untuk mengontrol gula darah. Informasi mendapat saran atau perawatan DMG dalam kehamilan adalah dari tenaga kesehatan yaitu bidan, dokter, serta selain tenaga kesehatan dari teman dan internet. Kesimpulannya kebutuhan ibu hamil dengan DMG teridentifikasi empat tema, yaitu dukungan keluarga, dukungan sosial, dukungan tenaga kesehatan dan informasi. Kata kunci: diabetes melitus gestasional, kehamilan, kebutuhan. ABSTRACT GDM can overcome serious problems that can overcome short-term and long-term health problems for mother and baby. a diagnosis of GDM has a negative emotional effect. Pregnant women 's perception of GDM can affect lifestyle changes. The first line of management of DMG is lifestyle changes. Diagnosis of gestational diabetes mellitus. Qualitative research methods by studying phenomenology. Locations in Karanganyar Regency are Jaten I Health Center, Matesih Health Center and Karanganyar District Public Hospital, in October 2019 - January 2020. Sample sampling criteria Data collection by semi-structured interviews with one-on-one interviews. Data Validity Test with Credibility in this study using the triangulation validity strategy, Transparency, Dependability, Confirmability. Data analysis with Interpretative Phenomenological Analysis (IPA). The results of the study of the needs of pregnant women with DMG identified four themes, namely supporting the family in terms of controlling diet, sending check to health workers, and reminding for sports activities. Social support, which is a way to control blood sugar. Support of Health Workers, namely advice and motivation to control blood sugar. The information obtained from DMG advice or treatment in the assessment is from health workers, namely midwives, doctors, and also health workers from friends and the internet. In conclusion, the needs of pregnant women with DMG identified four themes, namely family support, social support, support of health workers and information.

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Social Engagement and Episodic Memory in Non-Hispanic Black and White Older Adults

Innovation in Aging ◽

10.1093/geroni/igaa057.1101 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 343-343

Author(s):

Abbey Hamlin ◽

A Zarina Kraal ◽

Laura Zahodne

Keyword(s):

Social Support ◽

Older Adults ◽

Episodic Memory ◽

Cognitive Aging ◽

Social Engagement ◽

Future Research ◽

Social Activities ◽

Linear Regression Models ◽

Significant Positive Association ◽

Cross Sectional

Abstract Social engagement may confer cognitive benefits in older adulthood, but studies have typically been restricted to largely non-Hispanic White (NHW) samples. Levels of social engagement vary across race such that NHW report larger social networks, more frequent participation in social activities, and greater social support than non-Hispanic Blacks (NHB). Associations between social engagement and cognition may also vary by race, but research is sparse. The current cross-sectional study examined associations between different aspects of social engagement and episodic memory performance, as well as interactions between social engagement and race among NHB and NHW participants in the Michigan Cognitive Aging Project (N = 247; 48.4% NHB; age = 64.19 ± 2.92). Social engagement (network size, activities, support) was self-reported. Episodic memory was a z-score composite of immediate, delayed, and recognition trials of a list-learning task. Separate hierarchical linear regression models quantified interactions between race and each of the three social engagement variables on episodic memory, controlling for sociodemographics, depressive symptoms, and health conditions. Results showed a main effect of more frequent social activity on better episodic memory, as well as an interaction between race and social support indicating a significant positive association in NHB but not NHW. These preliminary findings suggest that participating in social activities may be equally beneficial for episodic memory across NHB and NHW older adults and that social support may be particularly beneficial for NHB. Future research is needed to determine the potential applications of these results in reducing cognitive inequalities through the development of culturally-relevant interventions.

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Late effects of cancer (treatment) and work ability: guidance by managers and professionals

BMC Public Health ◽

10.1186/s12889-021-11261-2 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Ingrid G. Boelhouwer ◽

Willemijn Vermeer ◽

Tinka van Vuuren

Keyword(s):

Social Support ◽

Cancer Treatment ◽

Work Ability ◽

Late Effects ◽

Cancer Recurrence ◽

Organisational Culture ◽

Job Resources ◽

Structured Interviews ◽

Starting Point ◽

Cognitive Problems

Abstract Background The prevalence of the group of workers that had a cancer diagnosis in the past is growing. These workers may still be confronted with late effects of cancer (treatment) possibly affecting their work ability. As little is known about the guidance of this group, the aim of this study was to explore the experiences and ideas of managers and professionals about the guidance of these workers in the case of late effects of cancer (treatment). Given the positive associations with work ability of the job resources autonomy, social support by colleagues and an open organisational culture found in several quantitative studies, these job resources were also discussed. Further ideas about the influences of other factors and points of attention in the guidance of this group of workers were explored. Methods Semi-structured interviews were conducted with managers (n = 11) and professionals (n = 47). Data-collection was from November 2019 to June 2020. The data were coded and analysed using directed content analyses. Results The late effects of cancer or cancer treatment discussed were physical problems, fatigue, cognitive problems, anxiety for cancer recurrence, and a different view of life. The self-employed have less options for guidance but may struggle with late effects affecting work ability in the same way as the salaried. Late effects may affect work ability and various approaches have been described. Autonomy, social support of colleagues and an open organisational culture were regarded as beneficial. It was indicated that interventions need to be tailor-made and created in dialogue with the worker. Conclusions Especially with respect to cognitive problems and fatigue, guidance sometimes turned out to be complicated. In general, the importance of psychological safety to be open about late effects that affect work ability was emphasized. Moreover, it is important to take the perspective of the worker as the starting point and explore the possibilities together with the worker. Autonomy is an important factor in general, and a factor that must always be monitored when adjustments in work are considered. There is a lot of experience, but there are still gaps in knowledge and opportunities for more knowledge sharing.

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