Needs of persons with dementia and their family caregivers in dementia cafés

Fukui, Chie; Fujisaki-Sueda-Sakai, Mahiro; Yokouchi, Nobutada; Sumikawa, Yuka; Horinuki, Fumika; Baba, Atsushi; Suto, Makoto; Okada, Hiroko; Ogino, Ryogo; Park, Hyosook; Okata, Junichiro

doi:10.1007/s40520-019-01129-2

Cited by 13 publications

(13 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Our findings substantiate results from evaluations of in-person models showing that while most Memory Café guests are primarily motivated to attend to connect with others, many guests seek more than social opportunities and also hope to meet a range of other needs ( 18 , 23 ). In supporting the social well-being of families living with dementia, our findings indicate that virtual Memory Cafés can also address other practical needs, including the opportunity to learn through observing others in attendance, engaging in cognitively stimulating activities, and being connected to community resources.…”

Section: Discussionsupporting

confidence: 84%

“…Findings suggest that virtual Memory Cafés may be effective facilitators of social connectedness for families living with dementia. Key themes from this study are in line with existing evidence that Memory Cafés may be beneficial to participants in supporting their socialization needs as well as providing some additional benefits for attendees ( 18 , 20 , 23 ). Of particular importance following restrictions on social gatherings since COVID-19, this study sheds some light on how virtual models of Memory Cafés might achieve these established benefits of these community programs.…”

Section: Discussionsupporting

confidence: 83%

See 1 more Smart Citation

“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

Masoud¹,

Meyer²,

Sweet

et al. 2021

Front. Public Health

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionsupporting

confidence: 84%

Section: Discussionsupporting

confidence: 83%

“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

Masoud¹,

Meyer²,

Sweet

et al. 2021

Front. Public Health

View full text Add to dashboard Cite

show abstract

“…To this end, several studies have shown the effectiveness and diversity of dementia cafés, but there are few published articles focusing on what persons with dementia and their family caregivers need and whether and to what extent the services provided satisfy their needs 26,27 . Our data confirm the evidence of the current literature 16,28,29 . For this reason, we believe that our multi‐specialist program can be considered useful to stimulate psychological well‐being, reduce BPRS, and improve QOL of people with dementia living in nursing homes, as well as reduce caregivers' burdens.…”

Section: Discussionsupporting

confidence: 78%

“…This, in turn, may reduce social isolation and provide some sense of ‘normality’ in carer lives, simultaneously providing peer support. Indeed, a very important finding is how cafés may help to somehow normalise dementia 16,28,29 …”

Section: Discussionmentioning

confidence: 99%

“…This can help them feel more confident about the future and reassure them about any future challenges. Importantly, by attending the café, they learn about where they might access other types of support both from services and from other carers 28 . In fact, our dementia cafés provided a space that encouraged both patients and caregivers to interact and do activities both with the person they supported and peers.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

How patients with mild dementia living in a nursing home benefit from dementia cafés: a case‐control study focusing on psychological and behavioural symptoms and caregiver burden

et al. 2021

View full text Add to dashboard Cite

Background Dementia is a syndrome, mainly due to neurodegeneration, affecting cognition, behaviour, feelings and relationships. Pharmacological treatment is still challenging and thus different ways to improve/slow down the disease are necessary. Methods Twenty‐five subjects with mild dementia, living in a nursing home, and their relatives were invited to attend a dementia cafe, a community group which provides support for families affected by dementia. Each patient was evaluated by a neuropsychologist, through the administration of a specific neuropsychological battery, before and at the end of the study. Their outcomes were compared to a matched group of patients with dementia receiving psycho‐counselling. Results After the dementia cafe meetings, patients showed higher significant changes in mood (P < 0.01), behavioural symptoms (P < 0.001), quality of life (P < 0.001), and caregiver burden (P < 0.001). The control group significantly improved only in quality of life with a reduction of caregiver burden. Conclusions Our findings confirm that patients with dementia may benefit from the dementia cafe, especially concerning behavioural symptoms. Moreover, caregivers find these cafés to be welcoming, relaxed places to socialise and access support and information. Future dementia cafés should create programs and comfortable environments answering to the different needs of the patients.

show abstract

Perspectives of people living with dementia and their care partners about the impact on social health when participating in a co‐designed Dementia café

Innes

Chesterton

Morris

et al. 2021

Health Social Care Comm

View full text Add to dashboard Cite

Social networks and informal social support are recognised as important for the well-being of both the community dwelling person with dementia and those who provide support (Wiersma & Denton, 2016). However, those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities to engage in social groups increasing the potential for loneliness and further isolation (Alzheimer Society, 2013;Victor et al., 2021) that is detrimental to social health. Supportive social environments focusing on retained abilities and social inclusion are key to balancing out the experienced negative impacts of dementia (Kitwood, 1997;Lee et al., 2020;Rey et al., 2019). Social health is a useful concept (de Vugt & Dröes, 2017) to understand and promote living well with dementia. Vernooij-Dassen et al. ( 2018) have argued that social health offers the opportunity to focus on the social aspects of living with dementia and a way of understanding the opportunities and barriers to living well with dementia and the importance of social networks and engagement with society for the lived experience of the condition. Crucially, it has been argued that facilitating 'social health' may be achieved by enhancing one's sense of active engagement and connectedness (Vernooij-Dassen et al., 2018). Thus, social groups provide a medium to promote Kitwood's (1997) notion of well-being via the preservation of social health when neurological health is impaired by dementia.Alzheimer's or Dementia Cafés are a popular approach to engaging those living with dementia and their care partners in supportive social environments. Dementia cafés stem from Bere Miesen's initiative to address the lack of psychosocial support available around dementia in the 1990s (Miesen & Jones, 2004). Two

show abstract

Needs of persons with dementia and their family caregivers in dementia cafés

Cited by 13 publications

References 15 publications

“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

“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

How patients with mild dementia living in a nursing home benefit from dementia cafés: a case‐control study focusing on psychological and behavioural symptoms and caregiver burden

Perspectives of people living with dementia and their care partners about the impact on social health when participating in a co‐designed Dementia café

Contact Info

Product

Resources

About