1. Background

It is estimated that over 55 million people are living with dementia worldwide [1] with more than 944,000 living with dementia in the UK [2]. Dementia leads to deteriorations in cognitive functioning including language, learning and memory [3] and the ability to perform activities of daily living such as getting dressed, managing finances and preparing a hot meal [4, 5]. The impacts of dementia often extend beyond the effects on cognition and often lead to behavioural and psychological changes including anxiety, depression and agitation. Post-diagnostic care and support for people with dementia and their carers is important and can lead to better health outcomes for both people with dementia and their carers. This can include activities in the community, paid carer support, local support groups, a befriending service, accessing a day centre or adaptations to the home [6].

Delivering affordable, sustainable and accessible post-diagnostic support to people with dementia and their carers is a global challenge [7]. Evidence suggests that there is currently a lack of services and accessible postdiagnostic support, particularly in the later stages of the condition [8, 9]. In addition, the provision of post-diagnostic support has been negatively impacted by the COVID-19 pandemic [10, 11], resulting in reduced availability and access to support services for people with dementia and their carers. Access to community-based support groups can reduce feelings of social isolation and help people with dementia and their carers feel more supported within their communities [12, 13]. Research has shown that community support groups promote independence and may even reduce or delay the need for more costly and advanced forms of support such as home support, respite or residential care [14]. It is, therefore, important to prioritise the provision of widely available and accessible post-diagnostic support in multiple forms.

Social support and care such as day centres, respite care, community support groups, and paid home carers are fundamental in helping people with dementia and their carers to live well and alleviate caring pressures and duties [15]. People living with dementia often struggle to get the support and care they need post-diagnosis, and this is a problem both nationally and globally [16, 17]. There are several barriers and inequalities in the availability and accessibility of dementia care and support including geographical location, living situation, age, gender, education, household finances and dementia subtype [18, 19]. For example, people with dementia living in rural or more deprived areas often have reduced availability, choice and awareness of services which creates additional barriers to accessing vital support services [20] and those living alone and without informal carer support encounter more barriers than those with informal carer support [21]. Furthermore, support services are often designed for people with Alzheimer’s disease or older adults, making them less suitable or appropriate for those with rarer forms of dementia, such as young-onset dementia or dementia with Lewy bodies, due to differences in symptoms or age [22]. It is also often the case that these individual barriers do not operate separately and interact, creating complex and difficult barriers to accessing appropriate and effective support and care.

When caring for and supporting people living with dementia a person-centred approach should be used. The term person-centred care was first introduced by Kitwood [23] who believed that the environment has as much of an effect on the brain as the brain has on people with dementia abilities. Kitwood [23] rejected the standard rigid medical approach to treating dementia and believed that the basic assumptions in the medical science of dementia and caregiving were too negative and predictable. Kitwood and Bredin [24] put forward evidence that dementia does not progress in a universal, consistent or linear manner. It was suggested that the condition varies substantially from person to person and found a need for high-quality interpersonal care that is respectful, develops trusting relationships and focuses on personhood. Person-centred care provides a framework of values that are humanitarian, ethical and respectful of the person living with dementia [25, 26]. It has been argued that person-centred care can be provided by practitioners by focussing on the selves of people living with dementia [27] and maintaining the person’s identity. Person-centred care approaches have influenced policies on care provided, with governing bodies in the UK arguing for the need for holistic societal approaches to supporting those living with dementia. It is argued that community support, family, carers and health and care services, are developed around the person with dementia with a person-centred approach. For community support to be effective, there must be good public awareness, education and acceptance of dementia alongside services that are proactive, available and accessible [28]. For person-centred care to be fully effective, community support and engagement plays a key role. The adoption of person-centred approaches within the community could improve accessibility and care delivery, reduce barriers and help people with dementia and their carers to have access to appropriate, engaging and tailored support.

Community-based singing support services are an engaging form of postdiagnostic support for both people with dementia and their carers. Singing can act as a form of cognitive stimulation, by combining language, music and instinctive human behaviour to enhance neurological stimulation [29]. Singing has been linked to improved memory, cognition and language abilities as it stimulates brain pathways other than in plain speech [30]. Singing involves listening to oneself and others, contributing to the development and refinement of auditory processing skills [31]. In addition, music support services have been found to improve mood, levels of agitation and quality of life for people living with dementia [32–34]. Research has demonstrated that carers also experience benefits of music interventions in the form of improved mood, quality of life and reduced feelings of social isolation. When attended together, music interventions have been found to improve the relationship between the person with dementia and their unpaid carers in addition to easing the carer burden [35]. Due to this, it is vital to have community support groups that are accessible to both people living with dementia and their carers. However, despite the benefits, many people with dementia and their carers encounter barriers when trying to access music-based support groups. These barriers are likely to be greater for people in certain geographical locations and due to certain sociodemographic factors, such as age, socioeconomic position or ethnicity. These factors likely contribute to known inequalities in dementia care and support. These barriers can result in people with dementia and their carers failing to access potentially beneficial support.

Wider research into fostering dementia-friendly communities and promoting engagement with community support has found that dementia-friendly communities foster social inclusion. However, a lack of resources and difficulty ensuring representation from marginalised groups provides challenges [36]. This lack of resources and availability of tailored appropriate support services likely creates barriers to engagement [37]. Studies have identified barriers to dementia service use, which include a lack of information; stigma; costs associated with accessing services; inappropriate support services and problems navigating the system [38, 39]. Further research into access to community services has identified a wide range of barriers, from systemic issues such as infrastructure and cultural differences to individual and interpersonal factors, such as caregiver support, awareness and attitudes. These barriers significantly impact the quality of life for people with dementia and may reduce the time they can remain in their own homes or communities [40]. Caregivers play a pivotal role in facilitating access to and engagement with dementia support services [40]. A study addressing caregiver barriers to service use proposed six key recommendations for dementia service organisations to overcome these challenges: (1) be proactive and schedule regular meetings; (2) use consistent, empathy support to build relationships; (3) provide support groups; (4) tailor support; (5) ensure expert knowledge and promote knowledge exchange and (6) promote the organisation and services offered [37].

While there is substantial research on the barriers and facilitators to accessing dementia support services, there remains a gap in understanding the specific barriers and facilitators associated with singing-based community support groups. Further exploration across a range of key stakeholders is needed to address this gap. A greater understanding of these barriers and facilitators, particularly in rural areas, could help to improve the accessibility of current community-based singing support groups. The primary objective of this paper is to develop a greater understanding of barriers and facilitators to accessing a community-based singing support known as “Lyrics and Lunch.” The following research question will be addressed: What barriers and facilitators are encountered by people living with dementia and their carers when accessing a community-based music support group?

2. Methods

3. Results

4. Discussion

This study qualitatively examined barriers and facilitators to accessing and engaging with a singing support service for people with dementia and their carers. Travel, increased reliance on carers and health comorbidities were evidenced as barriers, whilst engagement with music and promoting effective communication and accessibility were evidenced as facilitators. Some of the barriers that were found relating to accessing community groups have the potential to disproportionately impact people from lower socioeconomic status and those living in rural areas. Several facilitators were identified for ways in which to foster continued engagement with services and facilitate ease of access.

Travel was found to be a barrier to access and to continued engagement with the singing support service. Many participants discussed the need for services to be close by to reduce travel demands and the reliance on driving to be able to attend sessions, particularly in more rural areas. This is consistent with previous research stating that transport difficulties and distance from services can act as barriers to service use [43–45]. Travel and transport to services have also been found to disproportionately impact people from rural areas and those from lower socioeconomic backgrounds due to less availability of services in the area, less availability and a lack of feasibility of public transport and greater costs associated with travel when in rural areas. Gibson et al. [46] reported that carers of people with dementia living in rural areas face unique challenges, including geographical barriers, financial concerns and a lack of dementia-specific services creating inequalities based on geographical location. It was reported that despite these challenges, many carers received support from within their local communities often acting as a safety set for support. Another factor discussed by participants was the cost of travel when public transport was not suitable. Alternative options, such as taxi or travel by car, may be more feasible but also often have higher costs associated with them and can also be accompanied by their own barriers. This creates an additional barrier of cost likely to disproportionately impact people from lower socioeconomic positions [19]. Due to these factors, there is an increased need for services to be widely available to facilitate engagement and reduce barriers associated with travel. Increased availability and accessibility of public transport in rural areas may also help to facilitate engagement and accessibility. It should also be noted that when setting up support services for people living with dementia, organisers should be mindful of these barriers and select locations with good public transport networks, ample parking, near local communities and where possible consider shared transport options such as private bus pickups to help people attend the service.

Increased reliance on carers was recognised as a barrier to accessing and engaging with singing support services. It was discussed by carers and people with dementia that to attend the service, they relied on a carer to go with them. Unpaid carers also discussed how this reliance at times led to increased stress and demands on them. However, despite these increased demands, singing support services have been shown to also benefit the carer [47] and improve the relationship between the person with dementia and their carer when attended together [48]. The wellbeing benefits to carers may outweigh the increased demands involved in attending the service. It should also be noted that around 120,000 people with dementia in the UK live alone [49] and may not be able to rely on regular and consistent support from carers. People with dementia who live alone are recognised as a vulnerable group with an increased risk of unmet social, environmental and psychological needs [21]. This can, therefore, prohibit many people with dementia from accessing singing groups, and future research should explore the support needs of people with dementia living alone when trying to access support and care settings.

A further barrier to accessing postdiagnostic support can be health comorbidities. It is estimated that approximately 70%–90% of people with dementia have at least one health comorbidity [50]. Managing multiple chronic diseases can be challenging and lead to a lower quality of life; increased likelihood of hospitalisation; increased mortality [51–53] and additional accessibility challenges when accessing and engaging with services [54]. In the current study, participants stated that health comorbidities that occur alongside their dementia can act as a barrier to engagement It was also noted that carers’ health conditions can act as a barrier to engagement due to increased reliance on carers to attend the service. These barriers further support the need for person-centred approaches to be utilised in community support to help recognise people’s individual needs and where possible put provisions in place to reduce individual access and engagement barriers.

However, some aspects facilitate engagement. Familiar songs were highlighted as a key element to facilitate continued engagement with community singing support services. Research suggests that familiar music is more effective in engaging and improving mood and functioning in people with dementia than unfamiliar music [55, 56]. Gerdner’s model of Individualised Music Intervention for Agitation [55] suggests that using individualised music which is familiar to the person can reduce agitation for people living with dementia [55], with several studies supporting the use of individualised music and familiar music for use in music therapy and interventions [57, 58]. A study conducted by Yang [56] directly examined neural responses to familiar and unfamiliar music in people with Alzheimer’s disease and found a greater number of active brain areas in response to familiar music compared with unfamiliar music suggesting greater engagement. These results support the use of familiar music as opposed to unfamiliar music in music therapy and interventions for people with dementia [59]. It is thought novel stimuli can make comprehension more difficult and increase cognitive demands for people with dementia [60], which may lead to disengagement and frustration. Evidence suggests that singing interventions should use familiar songs and where possible an individualised element to songs selected to foster engagement for people with dementia. However, in group music intervention, settings having individualised music and songs which are familiar to all attendees can be challenging due to variations in age, cultural backgrounds and music taste. This could act as a barrier to engagement if the music is not individualised and unfamiliar to the person living with dementia, which may disproportionately impact people with young-onset dementia or people from non-White ethnic backgrounds. Music support groups should acknowledge the need for music to be as individualised as possible and tailor songs to suit individual attendees. This may include taking song requests and asking people’s music preferences when they start attending the support group. Groups should also incorporate additional props and engagement methods such as percussion instruments, bubbles and waving of scarves to offer another form of engagement and participation when people are unfamiliar with the song or unable to sing along. The Lyrics and Lunch groups have employed these methods to aid in the delivery and inclusiveness of the intervention.

Promoting effective communication and accessibility were found to be additional facilitators. Creating an environment that is welcoming, friendly and mindful of people’s individual needs facilitates ease of access and fosters engagement and continued participation. This links to theories of person-centred care [61] that can be applied to community support groups as well as primary care [62]. Brooker [63] outlined four key components that are integral to person-centred care for people living with dementia: (1) valuing and respecting people with dementia and their carers; (2) treating people with dementia as individuals with unique needs; (3) seeing the world from the perspective of the person with dementia to understand their behaviour and validating their experience and (4) creating a positive social environment in which people with dementia can experience wellbeing through care that promote the building of relationships [62]. These components of person-centred care when applied to community support could help foster engagement and access to services by helping to create a welcoming environment that is person-centred and tailored to people’s individual needs.

5. Limitations

A limitation of the current study is that we only examined one singing intervention service. This limits the generalisability of the findings to other services and areas of the UK. The study was also unable to directly compare whether barriers and facilitators differed based on geographical location such as a rural versus urban area. However, this study highlights barriers that may prevent access and engagement with community-based singing support groups and forms a basis for provisions to be put in place to mitigate these barriers and improve access for people living with dementia. Furthermore, this study only examined barriers and facilitators in community settings and these barriers are likely to differ when examining the provision of services in daycare centres and care home settings. Future research should examine barriers to accessing music-based support services in other settings and integration with other dementia services such as day centres and examine these across a range of singing support services in different geographical locations. All participants in this study were White British, meaning perspectives from other ethnic groups were not represented. This limitation reflects the participant demographics within the support groups and raises the possibility that ethnicity itself may act as a barrier to access and engagement. In addition, while the sessions are open to individuals of all religious and nonreligious backgrounds, the venue itself may pose a barrier for certain people to attend or even learn about the sessions. However, this study cannot determine these factors, as the sample consisted solely of individuals already accessing and engaging with the service. Nonattenders, who may face additional barriers, were not included in this study. This limitation underscores the need for further research to explore barriers faced by nonattenders.

6. Conclusion

The positive impacts of singing interventions on people with dementia and their carers on multiple domains such as cognition and wellbeing are evident in the literature [48, 64, 65] and the benefits should be more widely acknowledged and supported as a nonpharmacological approach to support people with dementia. Music interventions can be cost-effective methods to improve wellbeing in people living with dementia and wider availability of services is needed to improve ease of access and reduce the travel demands when attending services. A greater understanding of these barriers and potential facilitators to accessing community-based singing support services, particularly in rural areas, could help to improve the accessibility of current and future community-based singing support groups.

Conflicts of Interest

Jeanette Main is a trustee and employee of the Lyrics and Lunch charity and Carol Holland is also a trustee of the Lyrics and Lunch charity. All other authors declare no conflicts of interest.

Author Contributions

Funding was obtained by M.P., C.H., C.G., H.B. and F.A. Conceptualisation and project administration contributions were made by all authors. The original draft preparation contributions were made by M.P. All authors contributed to revising the manuscript. All authors read and agreed to the published version of the manuscript.

Funding

This is an independent research funded jointly by the National Institute for Health and Care Research Applied Research Collaboration Northwest Coast and The Alzheimer’s Society. The views expressed in this publication are those of the authors and not necessarily those of the National Institute for Health Research or The Alzheimer’s Society.