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London Metropolitan University
• To understand the role of carers of people living with dementia
• To learn about the benefits of a support group for carers
• To recognise the importance of collaboration when designing carer support groups
Significant numbers of people in the UK care for someone living with dementia. Providing support for carers is socially and economically important, enabling them to continue in their caring role and improving their day-to-day experience of caring. This article comprises a reflection by one dementia nurse specialist who ran a six-week educational support group for carers of people living with dementia. It describes the development of the group and the challenges faced, as well as discussing the future of the group, including the need to ensure its sustainability through collaborative working. The article also details some of the positive outcomes described by carers who attended the group.
Nursing Older People. doi: 10.7748/nop.2021.e1315
Peer reviewThis article has been subject to external double-blind peer review and checked for plagiarism using automated software
Correspondence Conflict of interestNone declared
Daughtrey L, Board M (2021) Developing a support group for carers of people living with dementia. Nursing Older People. doi: 10.7748/nop.2021.e1315
Published online: 27 January 2021
Approximately 850,000 people are living with dementia in the UK and this number is predicted to increase to one million by 2025 (Prince et al 2014). Most live in the community, however, one in four hospital beds is occupied by a person living with dementia (Royal College of Psychiatrists 2019). Dementia affects not only people with the condition, but also the lives of those around them. In the UK there are 700,000 carers of people living with dementia (Lewis et al 2014). It is important for all healthcare professionals to appreciate the effects of dementia and understand how best to support those with the condition, their families and carers.
The National Institute for Health and Care Excellence (NICE) (2018) recommends a variety of approaches to supporting carers, including psychoeducational interventions. One of the aims of these interventions is to improve carers’ resilience to ensure the sustainability of the care they provide (Parkinson et al 2016). It is also essential that support is based on carers’ individual preferences (Barnes et al 2017).
This article describes a carers’ information programme developed in 2019 by two dementia nurse specialists (DNSs) in an acute hospital and includes a reflection by the lead author. The programme was developed in response to the support needs expressed to the DNSs by carers visiting people with dementia in hospital. The programme aimed to provide carers with dementia-focused education alongside peer support.
• Delivering structured psychoeducational support sessions to carers of people living with dementia can increase their resilience
• Support sessions can also assist carers to sustain the care they provide
• As ‘experts by experience’, carers are well placed to support each other
• Peer support offers carers an opportunity to share experiences and reduce carer burden
Carers are often ‘experts by experience’ and are well placed to support each other (NHS England 2014). They value peer support as it offers them an opportunity to share their experiences and feel listened to (Smith et al 2018). When peer support is provided in a group format it can reduce carer burden (Dickinson et al 2017). Furthermore, delivering structured sessions with specific topics can increase carers’ motivation to attend, especially when the sessions focus on enriching carers’ skills (Yeandle and Wigfield 2011).
A dementia carers’ information programme was developed by two DNSs. The programme was based on their knowledge of the aspects of caring that people find most challenging, as well as the emotional and practical advice that can support carers. This knowledge was gained through the DNSs’ years of experience working with carers of people living with dementia. The programme was also influenced by a review of similar interventions, including the Alzheimer’s Society’s Care Information and Support Programme (CrISP) (Barnes et al 2013).
The initial aim was to support people who were caring for someone who was part of the DNSs’ caseload during a current or recent admission. The rationale was that providing an intervention for carers while their family member was in hospital could make it easier for the carers to attend support sessions. However, most of the carers who attended the programme were caring for someone who had not been in hospital recently, because many believed that accessing a support group while their loved one was still an inpatient was not the right time. Hospital admission can be a period of increased stress for carers due to the disruption of daily life and is not necessarily an appropriate time for group support (Jamieson et al 2014).
There was a significant amount of interest in the programme from carers who had seen it advertised on social media, in the local newspaper, and on leaflets and posters displayed in patient areas in the hospital. Some people called or emailed the dementia team to express an interest and others were approached by the DNSs on the wards. When carers expressed an interest, they were telephoned just before the programme started to remind them about it, or to offer them a chance to withdraw so that places could be offered to others. Some carers registered an interest but did not attend, or only attended one or two sessions.
The location for the programme was a designated training room at the hospital, which was easy to reach by public transport. Car parking and attendance were kept free to improve accessibility. The programme ran over a period of six weeks, which is considered the most effective length of educational intervention in this cohort (Jensen et al 2015).
Sessions were held for an hour and a half on Thursday afternoons. Afternoons were selected to fit in with people’s caring responsibilities, which could affect their ability to attend; however, on reflection, evening sessions might have been more suitable for those who worked or had other commitments such as childcare (Carers UK 2011). Some carer support groups allow people with dementia and their carers to attend together, which provides social opportunities for both, and some of the carers who attended this programme found it challenging to organise care for the person with dementia in their absence, a recurring theme in the literature (Van der Roest et al 2009, Carers Trust 2015). On one occasion, a carer attended a session with their partner who was living with dementia because they could not access support. However, this altered the group dynamics because some of the other group members became cautious about the topics they discussed for fear of upsetting the person living with dementia. This demonstrates the importance of providing carers with time and a safe space away from the person they care for.
Maintaining a consistent time for the sessions was valued by the carers as it reduced confusion and enabled them to plan. This consistency was extended to the programme facilitators, with all sessions being run by the same two DNSs. This enabled the carers to form relationships with the facilitators and with other group members, building trust and rapport. Developing therapeutic relationships with the carers and focusing on their individual needs improved engagement and the discussions became longer and more animated at each session as the carers became more relaxed in each other’s company.
The programme content focused on psychoeducation and covered a different topic each week. Table 1 details the content of each session.
The educational aspect of the programme aimed to improve carers’ understanding of dementia and the available coping strategies. Addressing the issue of behavioural changes in people living with dementia was important because this can be particularly challenging for carers to cope with; this aspect was discussed in sessions one and two, and later when focusing on the effects of caring in session six (Van der Lee et al 2017). However, education alone can be counterproductive if carers’ increased knowledge simply exacerbates their feelings of anxiety (Milne et al 2014). To mitigate this, group members were encouraged to ask questions during the sessions and the DNSs remained behind after each session to answer any further queries. The DNSs also distributed their contact details in case people wanted to ask questions later. Local carers’ support advisers were invited to attend session three so that carers had access to long-term support once the programme was completed.
Some sessions were dominated by one or two carers, who often related their own experiences at length. This could be challenging to contain at times because the DNSs did not want to invalidate these carers’ experiences. However, it was important to enable quieter members of the group to contribute by gently inviting them to share their thoughts and experiences and by being vigilant for nonverbal cues. These included group members making frequent eye contact with the facilitator when someone else was speaking or drawing breath as if they were about to speak (Yeandle and Wigfield 2011). In their feedback, the carers emphasised that an important and positive aspect of the programme was that everyone was given the opportunity to participate.
It was decided that the group should be limited to 15 carers to give everyone an opportunity to contribute. A smaller group might have allowed for more interaction, while a larger group could have been too impersonal. Ultimately, 14 carers attended the group.
During the group, the diversity of the carers’ experiences, roles and responsibilities became a concern. For example, some were caring for people living with advanced dementia, while others were caring for those with a recent diagnosis or who were in the early stages of dementia. Similarly, several carers appreciated learning about the progression of dementia, but others appeared to find this emotionally challenging. Carers of working age described the challenges of coping with the caring role alongside managing employment and financial concerns, while older carers reported struggling with the physical aspects of caring. Some of the group lived with the person they cared for while others did not, and these two groups found it challenging to relate to each other.
Conversely, the carers appreciated sharing their experiences and finding common ground. For example, two carers whose partners were living with early onset dementia expressed a desire to stay in contact and continue to support each other.
Although most carers in the UK are female, 42% are male; the group comprised 10 females and four males (Age UK 2015). Research has shown that male carers can be ambivalent about accessing support, which can increase their feelings of isolation (Greenwood and Smith 2015). Support groups must appeal to older male carers because they are less likely than females to access community services, with many believing that their needs are different and that support groups tend to be female-dominated (Slack and Fraser 2014).
Carers of people living with dementia can experience perceived stigma and social exclusion, especially when coping with complex physical and behavioural changes (Werner et al 2012). Attending a group designed exclusively for carers of people living with dementia can assist attendees to begin breaking down the barrier of stigma (Greenwood et al 2018). Although group support is beneficial, it is important that nurses do not overlook one-to-one support because carers may have individual, sometimes sensitive, issues they might prefer to discuss in private (Hannan et al 2016).
At the end of the programme, the carers were asked to complete an evaluation form and nine of the 14 members returned these. Feedback was anonymous to encourage the carers to express their thoughts honestly. One of the aims of the programme was to provide peer support and the feedback suggested that the carers valued the opportunity to meet ‘people in a similar position’, appreciated the sense of ‘knowing you’re not alone’ and were pleased that ‘everybody was so kind and helpful and understanding’.
During the programme, the DNSs allowed more carers to join the sessions after it had already begun; however, this was found to be unsettling for some people. One carer who had attended from the start believed it disrupted the group dynamics and noted that it was ‘nice to have a small group’, but ‘a little confusing when new members arrived halfway through the course’.
Another important aspect of the programme was supporting carers to develop resilience and increase their knowledge of dementia. The aim was to assist them in managing their day-to-day lives when caring for someone living with dementia. Feedback demonstrated that the carers found the session content and discussions useful and suggested that after the programme they understood ‘so much more about how to deal with things’ and were given ‘very practical ideas on how to help, all backed up with reasons and knowledge’. Others reported on the effectiveness of the psychoeducation, noting that it had given them a ‘much better understanding of dementia’ and enabled them to manage their caring role by feeling ‘inspired on how to do things as symptoms progress’.
The feedback also stated that the carers appreciated being ‘comfortable to join in’ and that ‘all attendees had the chance to speak, share issues and ask for help’. Some carers reported that the programme was ‘very well facilitated’ and ‘thought evoking’. Many also provided positive feedback about the two DNSs, describing them as ‘compassionate, caring, friendly and kind’, and suggesting that they were ‘exceptionally equipped with knowledge, compassion and humour’. This inspired the DNSs’ confidence to deliver future programmes.
When investigating whether or not to run another programme, the authors took time to reflect on their experience and reviewed the literature concerning how best to support carers; however, they concluded that the programme was the optimal method.
Duplication of services can be confusing for carers, so it was important to consider how the programme complemented local services. Targeting resources through partnership working across health and social care can improve services; however, this can be challenging to achieve. Dickinson and Glasby (2010) discussed the need for long-term collaboration and how this can enhance services previously delivered by one agency in isolation. Using established networks with other specialists in dementia care across a locality allows different organisations to combine their resources. This can mitigate some of the practical barriers carers experience when they attempt to access support, such as the disparate location of services. For example, social services, GP practices and other healthcare professionals can liaise to identify carers, particularly in hard-to-reach groups such as male carers, who might benefit from additional support. On reflection, acting in isolation on this project when they could have worked with other specialists in nearby NHS trusts to share delivery of the programme emphasised the DNSs’ lack of experience.
An awareness of the barriers carers experience when attempting to access support prompted the DNSs to consider potential changes to their programme. For example, one of the most significant barriers to overcome was providing respite for carers to enable them to access the programme, and this prompted an investigation of the feasibility of running parallel sessions for the carers and their family members who were living with dementia. However, it was decided at that point in time that parallel sessions were not feasible, mainly due to the unavailability of staff and space.
The programme was set up in response to a need expressed by carers to the DNSs. The carers wanted to understand more about dementia and access support that would enable them to improve the care they provided to their family member. On reflection, the DNSs realised that they could have adopted a more systematic approach to the project, for example by using plan, do, study, act (PDSA) cycles for improvement (Langley et al 1996). This would have enabled the DNSs to formally identify those elements of the programme that worked, amend the programme accordingly, and test any changes. However, the lack of resources at the time meant that the DNSs were only able to run the course once.
The DNSs discussed how they could have delivered the programme by sharing responsibilities across different trusts in the area and adopting a more systematic approach. For example, sharing knowledge and expertise and working collaboratively with other dementia specialists and the local university may have assisted the DNSs to deliver a more robust evaluation of the available support programmes for carers.
Although the provision of group psychoeducation benefited the carers, as shown in the feedback to this project, the literature is not consistent in outlining when, where and by whom such psychoeducation should be offered (Hall and Skelton 2012, Bunn et al 2015). This emphasises the complexity of considering whether a support programme such as this should be provided in a general hospital. However, carer well-being does affect hospital admissions and contributes to delayed discharge, with 20% of hospital admissions of people aged over 75 years occurring due to the breakdown of a carer (Conochie 2011). Furthermore, hospital admission often affects the functional abilities and behavioural and psychological well-being of people with dementia (Alzheimer’s Society 2016). A lack of information and ongoing support after a diagnosis of dementia can result in carers feeling unable to understand and adjust to changes in the person they care for (Van der Lee et al 2017). Therefore, it could be argued that investing in support for carers should be regarded as an effective use of resources for an acute trust. Additionally, a group format is cost-effective if the number of sessions is limited (Hopkinson et al 2018). However, while these factors represent the benefits of offering carer support in a general hospital, more research is required into the cost-effectiveness of such support services (Thomas et al 2017).
The NICE (2018) guideline for dementia advocates the use of psychoeducational training approaches to support carers and the recommended content is partly aligned with that delivered in this programme. The NICE (2018) guideline suggests that carers should be offered an opportunity to enhance their skills in communication, providing care, responding to behavioural changes, using purposeful activities and planning for the future. It also stipulates that support should be provided in easy-to-access locations and tailored to individual expectations in a variety of formats, including group sessions – which are reported as the most effective – individual sessions and online training. The NICE (2018) guideline also emphasises that some options, such as online or telephone support, can be invaluable for some carers (Carers UK 2011). This is even more pertinent in the context of COVID-19, with healthcare services being required to reconsider how they deliver support.
Sometimes healthcare services immediately opt for written formats when seeking to provide information for patients and their relatives. Although some carers may prefer this approach, others find leaflets ineffective and may even be concerned that leaflets can upset people living with dementia if they read them (Barnes et al 2013).
Finally, it is important that all healthcare professionals take responsibility for familiarising themselves with local services so that they can signpost carers to sources of support. Similarly, every healthcare professional who comes into contact with carers has a responsibility to engage with and support them.
In this project, carers of people living with dementia attended a six-week programme that combined education with support. The programme took place in a general hospital and aimed to ensure accessibility, inclusiveness and the opportunity to engage with others in a similar situation. Group members reported that they found the sessions enjoyable and that the programme assisted them in their caring roles. On reflection, the DNSs identified the need for improved collaboration and coordination when designing future carer support groups to ensure sustainability. Also, any future programme would require robust evaluation to support the initial findings concerning the benefits of these sessions.
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