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

Abstract

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

‘I want every minute to be worthwhile now’: The views and experiences of people living with dementia and their care partners about returning to in-person group meetings after COVID-19 lockdown restrictions

“…In this way, we emphasise that it is important to find the balance between ensuring individuals feel supported and safe, whilst also respecting that their perceptions of risk – and consequently to re-engagement – are varied and should be considered when reinstating groups. While shared decision-making and open on-going discussions about perceptions of safety and inclusion contributed to a successful transition to meeting in-person again for our participants, restrictions to their autonomy were felt to curtail their involvement in advocating for dementia awareness and rights ( Bowker et al, 2020 ; Innes et al, 2021 ). Such findings reflect the broader concern of lobbying groups in the UK and across the globe who fear that the COVID-19 pandemic – and the resultant loss of funding, priority, and sense of urgency in light of other health priorities – might be indicative of a ‘step back’.…”

“…Full ethical approval was obtained from the University of Salford ethics panel (approval number phase one: HSR1920-099; approval number phase two: 2153). Research participants were known to the researchers via an initiative known as the Dementia Associates Panel ( Innes et al, 2021 ). The Dementia Associates Panel, based at Salford Institute for Dementia (UK), consists of a group of Dementia activists who work to raise awareness of dementia at public events, co-design activities at the organisation, and contribute to, and shape the direction of, research and teaching.…”

“…Observations of the participants return to in-person meetings were conducted (SK) at (1) an initial outdoor meeting at a local garden site and (2) their first on-site meeting at the Institute for Dementia. Mood questionnaires were also administered to capture the participants’ attitudes towards in-person re-engagement before and after their first on-site meeting (see Johnson et al, 2017 ). Participants were asked to rate their mood at the beginning and end of the first in-person meeting, on a scale of 1–5 (1 = Not at all happy; 5 = very happy), and a further five open questions were included so they could express their perceptions, and experiences, of re-engagement.…”

“…Living well with dementia is supported by policy ( Department of Health & Social Care, 2015 ) and requires access to mental, physical and social engagement opportunities ( Alzheimer Society, 2013 ). Social groups for people living with dementia in the community can promote wellbeing through fostering a sense of belonging, creating a sense of achievement and purpose, providing opportunities for enjoyable and stimulating engagement and supporting positive and reciprocal relationships ( Innes et al, 2021 , Morris et al, 2021 ). However, the measures introduced by the UK Government in March 2020, and to varying degrees around the world, to reduce individuals’ social contact and limit the spread of COVID-19, led to community groups closing their doors and the reduction of vital support networks.…”

How Do We Know Co-Created Solutions Work Effectively within the Real World of People Living with Dementia? Learning Methodological Lessons from a Co-Creation-to-Evaluation Case Study

“…The consequences of people with dementia being socially isolated can have a negative impact on their condition, the recent pandemic providing increasing evidence of its effects [ 32 ]. Engaging positively with people with dementia within their home environment can not only halt cognitive decline; it can also reduce the effects of social isolation [ 15 , 17 , 33 ]. To combat social isolation, service interventions included support for accessing social and daytime activities, advice-giving and information, and the use of appropriate assistive technologies [ 16 ].…”