Patient and public involvement (PPI) was central to and integrated within all stages of this study, and our overarching goal was to ensure that we included a wide range of experiences of living with dementia, which includes supporting those who are often under-represented in research or who may find verbal communication difficult. We were also aware that the experiences of PLWD and carers may be very personal and have often been silenced, with traditional research methods or public consultation approaches, in turn, eliciting emotions that can be hard to express. In response, we employed four interlocking and integrated approaches to support involvement:
- We worked closely with our Carer Steering Group and Study Steering Group, which included PLWD and carers, to facilitate regular involvement in the direction and governance of the research.
- We organised large-scale consultation events, attended by 60 PLWD and carers (Cardiff, UK, 2018 and 2019), which involved regular discussions between PLWD, family carers, researchers and the wider team about the direction of the research, the analysis and development of the findings.
- Participants engaged in an arts-for-health enquiry in which they collaborated with an artist to produce creative pieces (n = 25) reflecting their personal experiences of being in hospital or caring for someone with dementia who has been hospitalised. This involved an opportunity to record their stories (n = 7) on camera in collaboration with filmmakers to raise awareness through sharing their personal stories.
- We delivered five engagement events in Cardiff, which involved 80 older people and PLWD from within ethnic minority; lesbian, gay, bisexual and transgender; and disability communities to discuss dementia care and involvement preferences in the research. In addition, we developed collaborative relationships with organisations with a specific remit to support communities living with dementia that are often excluded from research, including Diverse Cymru (Cardiff, UK), Alzheimer’s Society, Women Connect First (Cardiff, UK), British Deaf Association (London, UK), Down’s Syndrome Association (London, UK), Royal National Institute for Deaf People (London, UK), Stonewall Cymru (Cardiff, UK), the Mentor Ring (Cardiff, UK), Nubian Life (London, UK) and the Sub-Saharan Advisory Panel (Cardiff, UK). The principal investigator lead (SV) also conducted 20 in-depth interviews (face to face, by telephone or on Zoom) to explore the experiences of PLWD, as well as those of their families and carers.
Across these activities, key experiences and concerns for PLWD and family carers were identified, and these are discussed below.
Continence care
Participants reported that ward staff expected all PLWD to be incontinent. A significant belief across these groups was that PLWD who were previously continent became incontinent as a result of a hospital admission, and that this was caused by these assumptions and the clinical care they received during an admission. During the workshops, a carer tells her story through the collage to depict the obstacles her mother faced in regaining mobility and self-care during her last stay in hospital. The groups strongly believed that these approaches to continence care were a result of poor staffing and high staff turnover in acute wards caused by NHS funding cuts. Carers also reported a lack of dignity in the continence care provided to PLWD, with continence care for this patient group witnessed as public and visible to others in the wards.
Discharge delays
The groups described that becoming incontinent during an admission had long-term implications for the person, the organisation of their social care support and their opportunities to return home. Carers were key advocates in the discharge of PLWD from hospital; however, they expressed frustration at how long this took and how much pressure was required to get a relative living with dementia discharged. During the workshops, one carer described how her mother believed she was in an asylum while in hospital and her delayed discharge was likened to the transition from darkness to light, to going from the ‘mess and tangle’ of ‘hell’ back to a luxurious ‘feather bed’ of home surrounded by the warmth of those who knew and loved her.
The experience of stigma associated with a diagnosis of dementia
Participants spoke about the invisibility of living with dementia as both a physiological and a social experience. Hospital staff were described as not seeing the person, but instead labelling patients by their condition (i.e. ‘dementia’). Carers reported that staff responses to a diagnosis of dementia included giving memory tests (e.g. the Montreal Cognitive Assessment or a mini mental test) to the person when they were acutely ill, whereas other acute admitting conditions remained undiagnosed or diagnosed late. One carer noted that ward and medical staff assumed all symptoms were related to a person’s dementia, which meant that other common conditions, such as sepsis and delirium, remained undiagnosed. In the workshops, experiences of depersonalisation and invisibility of the person living with dementia during an admission were depicted in black and white drawing to represent the loss of identity in institutions. One family carer shaped her creative piece to resemble a form of loudspeaker, covered with the phrases she heard repeated by her mother’s during her hospital admission, including ‘What are you doing to me’, ‘Help!’, ‘What do you want?’ and ‘Where am I?’.
Communication
Once a diagnosis of dementia was discussed, the groups believed that this overshadowed all interactions. In the workshops, a person living with dementia created an art piece named ‘Empty Boxes? Look Inside’ to reflect his experiences of ward staff seeing only his dementia diagnosis and to emphasise his individuality: ‘These boxes might look the same, but people are very different from each other. Don’t put me in a box because I have a label of dementia’. PLWD felt that their diagnosis meant that they were treated with less respect than other patients, with staff spending less time explaining procedures to them and, instead, continuing with care delivery without taking time to introduce or explain procedures to the person. The communication of ward staff with PLWD was described by carers as emphasising prohibitions and reinforcing what they were not allowed to do. Carers also reported a lack of awareness among ward staff that PLWD often communicate non-verbally, which meant that ward staff did not recognise or respond to non-verbal cues indicating underlying care needs. The therapeutic value of touch was identified as important, but lacking, in the acute setting. In the workshops, a man living with dementia chose an image depicting a hug to represent supportive care, whereas a family carer traced her own hands with blue chalk, writing around it ‘hands in dementia provide assurance, comfort, safety, security, friendship and stability’, and she became visibly moved and emotional as she described its significance to the wider group.
Restrictive practice
During his admission, one man living with early-onset dementia described the experience of observing ward staff regularly shouting at another patient living with advanced dementia, which made him fear for the future. Carers also believed that there was an overuse of antipsychotic medication in the care of PLWD during an admission because it suited the hospital environment, rather than reflecting a person’s medical need.
Feelings of fear and vulnerability during a hospital admission
Overall, across the groups, there was a lot of fear about hospital admissions. One person living with dementia described feeling very scared and vulnerable during her admission. This woman described that, when her husband could not visit and there was nobody to talk to, staff would not spend time with her or comfort her, even when she was crying. Across these groups, carers raised significant concerns and fears about what happened when they were not there. A carer described their fear of witnessing screaming behind closed doors and finding bruising on their partner living with dementia during an admission. Creative pieces during the workshops reflecting these feelings included a woolly string placed in a pile in the middle of the paper with the description ‘Life all tangled up, trying to cope, a mess’. In addition, a ballpen drawing of a rose reflected the vulnerability and helplessness experienced by PLWD and their family carers.
Carers
Carers described wanting to be more involved in their partners care during a hospital admission, but believed that they were not listened to, did not have rights in the acute ward setting and could be kept away from the ward. In the workshops, letters in the screw-top glass jar represented the ‘communication nightmare’ of trying to convey the care needs of a person living dementia to ward staff and the difficulty of the person in finding words to make their care needs known during an admission. One carer noted that there was antipathy towards carers on the ward, even though their presence could minimise anxiety in a person living with dementia and, instead, wards prefer to use expensive agency one-to-one staff. Being ignored on a ward was a familiar experience for these carers and, during the workshops, the destabilising impact of this experience was represented by the stitched felt portrait pressed onto to a cold and hard surface.
Diversity and dementia
We delivered five engagement events in Cardiff, which involved 80 older people and PLWD from within ethnic minority; lesbian, gay, bisexual and transgender; and disability communities to discuss their experiences and involve them in the research. In addition, we developed collaborative relationships with organisations with a specific remit to support communities living with dementia that are often excluded from research, including Diverse Cymru, Alzheimer’s Society, Women Connect First, the British Deaf Association, the Down’s Syndrome Association, the Royal National Institute for Deaf People, Stonewall Cymru, the Mentor Ring, Nubian Life and the Sub-Saharan Advisory Panel.
The consultation process led to the development of three collaborative performances that explored dementia and ethnicity, hearing loss and sexuality, informed by the research findings and co-produced with people with lived experiences who actively contributed to script development. Although we heard many positive stories of care, many PLWD and carers reported negative and discriminatory experiences, including microaggressions and discriminatory language used by ward staff across care settings. These PLWD and family carers described feeling additionally vulnerable during a hospital admission and we have explored these in the following co-produced films:
- Next of Kin explores the issues raised by the Deaf/deaf community.192
- More Time explores the issues raised by the ethnic minority community and ethnic minority health-care workers.193
- Back in the Closet explores the issues for lesbian, gay, bisexual and transgender older adults raised by the lesbian, gay, bisexual and transgender community.194
For her work developing this programme, Sofia Vougioukalou was awarded the Alzheimer’s Society Cymru Dementia Friendly Diversity Award winner 2021 and the Public Involvement Award by Health and Care Research Wales.195