Carers: The navigators of the maze of care for people with dementia-A qualitative study.

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Carers: The navigators of the maze of care for people with dementia—A qualitative study

Dementia 0(0) 1–12 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214554930 dem.sagepub.com

Maggie Jamieson University of Canberra, Canberra, Australia

Laurie Grealish Subacute and Aged Nursing Griffith University, Griffith, Australia; Gold Coast Hospital and Health Services, Southport, Australia

Jo-Ann Brown Alzheimer’s Australia NSW, Sydney, Australia

Brian Draper School of Psychiatry, University of NSW, Sydney, Australia

Abstract Background: Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital. Methods: This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group. Results: During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need. Conclusion: The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and

Corresponding author: Maggie Jamieson, Public Health, University of Canberra, Locked Bag 1, Canberra ACT 2601, Australia. Email: [email protected]

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their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries. Recommendations: This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences. Keywords dementia, carer, person centred care, community services

Background In December 2013, the G8 Dementia Summit focused attention on the need for greater innovation to improve the quality of life for people with dementia and their carers, while reducing the emotional and financial burden (G8 Dementia Summit, 2013). Dementia not only affects the person with the condition but impacts on their family, with someone usually taking responsibility for a carer role. The care needs of people with dementia are the leading cause of dependency and disability for people over 60 years, posing significant social and health demands on informal carers, who report experiencing high levels of strain, with significant psychological and physical consequences, including a higher mortality rate (Australian Institute of Health and Welfare, 2012). Dementia costs not only emotionally but financially, at both the individual and system level. For example, in the UK at least three quarters of people in care homes are reported as having dementia thus increasing staffing costs (Matthews et al., 2013). People with dementia are overrepresented in general hospital and emergency populations (Banerjee, 2013) by staying twice as long as those without dementia and having higher rates of re-admission to hospital within three months of discharge (Australian Institute of Health and Welfare, 2012). Dementia is a significant health care issue. World-wide, dementia remains one of the greatest challenges faced by health and social care systems (World Health Organisation, 2012). In Australia, by 2050, the numbers of people diagnosed with dementia are estimated to triple from the current figure to over 900,000 (Alzheimer’s Disease International, 2009). Recent strategies have served to highlight the need for coordinated health and social services for this growing population (Australian Health Ministers Conference, 2006; Department of Health (UK), 2009; US Department of Health and Human Services, 2012; World Health Organisation, 2012). In 2012, dementia became Australia’s ninth national health priority demonstrating an increasing national strategic awareness of the needs of people living with dementia and their carers, but public and professional misconceptions remain, evidenced by a low level of diagnosis and inconsistent care for many (Banerjee, 2013). People with dementia are generally older and have multiple morbidities, raising questions as how to best organize care to address complex needs (Barnett et al., 2012). In a Scottish study, using a large crosssectional dataset comprising 1,751,841 persons across 341 general practices, only 17% of people with dementia had no other medical condition (Barnett et al., 2012). Importantly, this



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study comments upon the challenges of delivering care for people with multiple morbidities, and recognizes the need to develop interventions, reduce the burden and align health care services more closely with patient needs (Barnett et al., 2012). Gaps in the quality of care, especially on discharge from acute settings as a result of insufficient planning and resultant lack of coordination of care in the community for people with dementia have been identified previously (Chodosh et al., 2007; Dewing & Dijk, 2014). In acute hospitals, the needs of the carer are not consistently addressed (Bauer, Fitzgerald, Koch, & King, 2011; Lowson et al., 2013) yet it has been shown that caregivers are useful resources and should be part of the care team (Bradway & Hirschman, 2008). The inclusion of caregivers can contribute to improving the healthcare experience, especially the process of including the preferences for care, which as part of discharge planning (Bauer, Fitzgerald, & Koch, 2011; Fitzgerald, Bauer, Koch, & King, 2011; Lowson et al., 2013) has been identified as critical (Australian Health Ministers Conference, 2006; Bauer, Fitzgerald, Koch, & King, 2011; Bauer, Fitzgerald, & Koch, 2011; Department of Health (UK), 2009; Dewing & Dijk, 2014; Fitzgerald et al., 2011; Lowson et al., 2013; Say & Thomson, 2003; US Department of Health and Human Services, 2012). A meta-analysis of the health care experience of people with dementia and their caregiver in primary care noted five major themes: seeking a diagnosis, accessing supports and services, addressing information needs, disease management, and communication and attitudes of health care providers (Prorok, Horgan, & Seitz, 2013). This study conceptualized the health care experience as having multiple phases but did not address transition from hospital to home (Prorok et al., 2013). Previous studies have addressed the views of carers within acute care settings, noting that in some instances, carers felt that health professionals lacked expertise or were ill prepared in caring for people with dementia (Raivio, Laakkonen, & Pitkala, 2011; Spencer, Foster, Whittamore, Goldberg, & Harwood, 2013) or as suggested by other authors, health staff did not make the most of opportunities to engage in person centered care (PCC) for people with dementia (Bolster & Manias, 2010; Brooker, 2003; Clissett, Porock, Harwood, & Gladman, 2013; Jurgens, Clissett, Gladman, & Harwood, 2012; Spencer et al., 2013). One study concluded that carer perceptions of poor care were linked to care expectations and relationships with staff (Jurgens et al., 2012). It is worth noting however that some carers continue to deliver one to one personal care, as an extension their main carer role, when the person with dementia is in acute care (Spencer et al., 2013). In interactions with staff, carers report that communication by nurses is both positive and negative, and it seems that carer expectations of relationships correspond with their perceptions of met and unmet need. When carers perceive that they are not being kept informed, a feeling of being ignored and neglected can emerge (Clissett et al., 2013; Jurgens et al., 2012). In research into the experience of discharge, carers note that a lack of communication at discharge, results in either a delayed or conversely rushed and undignified process. (Bauer, Fitzgerald, Koch, & King, 2011; Bauer, Fitzgerald, & Koch, 2011; Fitzgerald et al., 2011; Spencer et al., 2013). However, the specific experience of being at home after hospitalization has not been described to date.

Method This study aimed to describe the experience of carers when the person with dementia transitions home from hospital. A qualitative design, focused on understanding the



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experience as described by the carers, was adopted. The methodology employed in this research project was a series of in-depth telephone interviews (Minichiello, Aroni, & Hays, 2008). The study was undertaken in conjunction with Alzheimer’s Australia NSW and participants were recruited via the organization’s existing care support networks. Initially, two focus groups with a total of 16 participants were held. Following feedback from these participants, the difficulties for carers to attend a focus group was considered and recruitment moved to individual telephone interviews. This study reports on the individual telephone interviews. A total of 30 people from across the state participated in a telephone interview. All participants self-selected, having made contact with Alzheimer’s Australia NSW by phone or email and their suitability was assessed. In order to participate, carers were required to be the primary carer of a person diagnosed with dementia; the person with dementia must have been hospitalized, including any time spent in an emergency department, in the last two years; the person with dementia must have returned home and not placed in permanent residential care. Three researchers conducted the interviews using the same semi structured questions schedule. The questions addressed: . Information about the direct experience of service use from hospital through discharge, to home; . Needs met and unmet of carers during this experience; and . The community service requirements following the time in acute care. An Institutional Human Research Ethics Committee approved the study. All participants volunteered and gave written consent and reconfirmed their consent in the transcribed recordings at interview. The majority of participants (n ¼ 26) were female and cared for a spouse, partner or relative, and one was a close friend. In the main, the person with dementia lived with the carer (n ¼ 28), one was in supported accommodation and one lived alone in private accommodation. All interviews were recorded and lasted from 30 min to 1.5 h. Thematic content analysis was undertaken with the research team independently developing categories to review and describe the data (Silverman, 2010). The team then discussed and engaged in constant comparison to arrive at the common themes and subthemes. Following the interviews and the analysis, a validation focus group with a new group of carers was conducted. These carers were invited comment on the themes that emerged from the data and share their views as to the consistency of the data with their personal insights and experience.

Findings The carers who participated in this study were active in their caring work, whether the person with dementia was living alone or with the carer. All of them were stoic in their responses, with many acknowledging that they would not access services until they felt that they were no longer able to cope. The main themes from the carer interviews follow.



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(1) Carers experienced a paradox in hospital: Some carers were asked by staff to be present as a familiar person to support basic requirements of care, including hygiene, diet, and toileting yet concurrently these carers felt ignored (by staff). Carers whose presence had been requested by staff and others who felt their presence was necessary stayed with the person who had dementia for long periods of time. Their main focus of concern was related to safety, particularly associated with the perception by the carers that there was a common staff assumption that the person with dementia could recall facts and make decisions. (2) The transition to home is difficult due to inconsistent, and often non-existent, discharge planning, resulting in no or delayed access to services. Carers felt judged by some health service providers, and experienced general tiredness from the hospital vigil. The complexity of service boundaries including admission rules and geographic borders with a lack of information about these boundaries adds to the carer burden of navigating the maze of care and support once they returned home. (3) When at home, social support for the person with dementia and their carer was highly valued drawing on informal networks, especially carer to carer, as well as formal respite care and social services.

Caring while in hospital While the focus of this study was on the experiences following discharge from hospital, all carers shared stories of being with the person with dementia in hospital. Many of the carers stayed long periods of time in the hospital, sometimes called in by the hospital staff but also to be present through what they believed would be a confusing and frightening experience for the person with dementia. I ducked home to change my clothes and I got a phone call. He was very restless and they were having trouble keeping him in bed. The next day they did thank me very much for helping them out overnight. They left him to me. (Wife A) She was so confused; I ended up staying at the hospital the whole time. If I wasn’t there one of my sons would sit with her, she couldn’t understand where she was. I thought her safety was compromised, so it was safer for her, we felt, to have someone there with her. (Daughter 1)

All carers commented on their contribution to basic nursing care needs such as helping with meals, showers and toileting, with one example capturing a common sentiment: They just left it all to me, makes you wonder what happens to people who don’t have a partner or a wife, what happens to them in these situations. (Wife B)

While their presence appeared to provide support for the hospital staff, carers reported feeling ignored in that staff would seek information and decisions from the person with dementia, and appear to dismiss their expressed concerns about the person’s capacity to provide up-to-date and correct information. Carers expressed deep frustration in their attempts to share information about the person with dementia, captured best by the following quotation: . . . there was never any communication with me, when I did try to say something they just ignored me and listened to him (Wife C).



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For the carers in this study, the stress of being in hospital exceeded the demands of daily life. Several reported taking the person with dementia out of hospital, against medical advice, feeling that they could no longer deal with the stress. I can’t handle this anymore; I’m absolutely buggered from no sleep at all night. (Partner)

In this small study only two carers had not been asked to stay with the person with dementia, nor did they feel they had to stay with the person. They reported wholly positive views of care in hospital and their inclusion in the care process. Interestingly, their positive experiences related to being in the same large metropolitan hospital, where they were the only carers of people with dementia who had been admitted into intensive care. All other carers either were required or voluntarily choose to deliver care; this finding was affirmed by the validation focus group. The carers’ focus on the hospital experience illustrates the importance of these interactions to the transition home.

Being discharged Most family carers did not consider the process of discharge as collaborative or consultative. It was the exception that discharge was undertaken in consultation with a geriatrician and/or social worker, those who experienced this mode of discharge found it helpful. However, this experience was rarely reported, with most reporting more abrupt discharge experiences. Several carers reported receiving phone calls from the hospital while at work or on the way to visit the hospital to indicate imminent (same day) discharge. For one family this abrupt process had a near disastrous outcome, the staff having told the person that he was going home, and packed him up, to await a family member to arrive. In the interim, the person left the hospital, and was found wandering and lost several kilometers away later in the day. This event caused the family great distress. The experience of an uncoordinated discharge process was for family and friends compounded by their own exhaustion after their hospital vigil. The tiredness was further complicated by delays in restarting community services that were accessed previously. As a result, people were not able to avail themselves of the previous level of support, for many having a delay of a week or more and trying to manage. He needed more care when he got home, I had to make an ACAT [Aged Care Assessment Team] assessment appointment, phone social workers, lots of phoning but no care, it took several weeks, then when they actually assessed him they said he didn’t qualify for more care. In the end I got a private carer. (Daughter 2)

The lack of planning regarding the transition from hospital to home exacerbated carer anxiety in several cases and was a strong influence on the success of re-establishing in the community.

Being home Once home, carers reported inconsistent access to services. Carers noted the lack of services near home, particularly rehabilitation services, in metropolitan as well as regional areas of the state. Service boundaries, particularly when strictly interpreted by providers, resulted in



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inflexible service delivery leading to fragmented services for people with dementia and, therefore, service gaps. An example of this was a family member seeking continence support for his mother. He tracked down a service provider, but when the provider discovered that the client was in receipt of a federal package, the provider withdrew services. The result was no help with continence and a very frustrating and tiring time for the family. This policy divide between federal and state funding packages was a major source of frustration for many carers. Access to services was often limited and inappropriate to their needs, as demonstrated by this example: When we got home we were then out of area for the ACAT team, but they never told me, If they‘d just asked me. . . ‘‘Are you out of the area?’’ They will do this on the other side. They never even said to me contact your case manager and get some help. No, nothing, nothing at all I just had to try my best. (Wife D) Dad returned to supported accommodation, he needs cream applied to an infected leg wound. Community nurses were reluctant, not serious enough, they told me to instruct the carers, but they were reluctant as this ‘therapy’ was outside their scope of practice. I was working at the time so after a while I got in a private care service, but really they were not much better, you just get passed around, somehow it’s nobody’s job, I had to just manage as best I could. (Daughter 3)

As a result of limited services access, often by perceived boundaries of service provision, burden of care was unintentionally returned to the carer. The carers and especially those in the validation focus group were very clear about the value and necessity of informal support networks: Being able to compare notes and talk about what services are available, the other members of the group often know about things. . . support that I don’t. It’s good to share; if you didn’t laugh sometimes you would just cry. Alzheimer’s is a cruel disease. (Daughter 4)

Carer support groups and informal networks were also a source for carers to identify and then navigate entry into services, where conversations with other carers provided vital information. In addition, these groups and networks were a source of emotional support, information, and a place to ‘‘let off steam’’. For those people that returned home but needed more services than pre-hospitalization, carers acknowledged a sense of great personal sadness when residential care was suggested by health professionals as an option for the future. Some carers felt that their abilities to care were being judged as inadequate when this was proposed.

Discussion The findings in this study suggest that the hospital experience and subsequent discharge process has a significant impact on the experience of transition from hospital to home for a person with dementia and their carer. The themes from these interviews with carers coalesce with the findings from the meta-analysis (Prorok et al., 2013) and of acute healthcare experiences (Clissett et al., 2013; Jurgens et al., 2012) and particularly emphasize the themes of: accessing supports and services; addressing information needs; and communication and attitudes of health care providers (Clissett et al., 2013). These findings provide insight into the influence of the carers’ hospital experience, particularly the paradox of the carer being required or choosing to provide personal care during the acute care episode yet these carers perceive that they are ignored in making



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decisions about care by staff. These accounts from carers suggest that they perceive care for people with dementia as challenging in acute settings, with inclusion of family carers being reported as problematic at times, yet they remain vital to the care process both in hospital and at home. The literature emphasizes strategies to improve care by promoting the discourse of person centred care (Prorok et al., 2013). However, the role of the carer, while seen as important (Bradway & Hirschman, 2008) is not necessarily viewed as central to person centred care. While the importance of staff recognizing relationships that matter to the person with dementia is deemed relevant to person centred care (Clissett et al., 2013), authors do not describe how to include carers in service delivery. These findings coalesce with another study, where carers experienced a cycle of discontent, beginning with unmet expectations about care needs, the suspicion and or uncertainty and this results in hypervigilant monitoring, and seeking out evidence of poor care (Jurgens et al., 2012). The carers in this study were also concerned about unmet care needs, especially in relation (Lowson et al., 2013) to communication and physical care, with many carers feeling a need to be ever present and a sense of their loved one not being safe. The experiences left carers with a sense of being required to deliver care, needing to be present, yet perversely being excluded from discussing care needs and expectations during and post hospital. This can be changed as shown by the work of Jurgens, Clissett, Gladman, and Harwood (2012), who noted that carers want to receive information about care, be offered the opportunity to be included in the care process and that building a relationship between staff and carer would serve to preempt feelings of discontent, these findings support the perceptions of the carers in this study. This study extends the work on discharge (Bauer, Fitzgerald, & Koch, 2011; Bauer, Fitzgerald, Koch, & King, 2011; Fitzgerald et al., 2011; Lowson et al., 2013) in terms of the importance of including the carer in the discharge plan (Bradway & Hirschman, 2008) and reiterates the carers’ frustrations associated with the complexity of access to community services post hospital stay (Bradway & Hirschman, 2008; Raivio et al., 2011). As with previous studies, our recommendations highlight the need for hospital staff to place more emphasis on better carer/staff communication, inclusion of carers and greater understanding of the importance of the family carer role, their need for support and to be involved in the care and decision-making process. Coordinated discharge planning needs to include the carer and community providers to ensure that there is a seamless service from hospital to community. In order for health care providers to meet care expectations for people with dementia and their carers in the acute setting there is a need to increase their knowledge in relation to: the role and expertise of the family carer; communications; and for practitioners to review how best to be inclusive of carers of people with dementia. The focus of care on the person is essential in delivering person centred care, but requires inclusion of their carer.

Implications/relevance In the acute care setting, carers need to be acknowledged and included in the care process, to assist in coordination of care and enable care that is person centred. This study supports assertions made elsewhere, that health care providers in acute settings are not grasping opportunities to make their care person centred (Clissett et al., 2013) in relation to people with dementia. Indeed, from the carers’ perspective, the findings serve to highlight the need for better communication, inclusion by the care team of carers in decisions, coordination and support is required while in acute care and in the transition to home. Communication about



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care with hospital staff is central to care coordination and planning for discharge. From this qualitative study, the carers’ need to give and receive information was paramount, and perceived exclusion from this process was bemusing and distressing. Underpinning the need for care support through the acute care process, including coordination and communication, there is a corresponding need to increase dementia specific training for hospital staff that incorporates knowledge about the nature of dementia, in order to ensure the consequent care required and availability of specific community services are appropriate to the individual circumstances (Clissett et al., 2013). This will contribute to appropriate and timely discharge planning that begins at the point of admission and continues throughout the hospital stay. A coordinated transition process (that includes carers) from hospital to home is urgently required. Better coordination and consultation between hospital staff, carers and community-based service providers is essential to support carers as they navigate the maze of complex and copious number of service options available to them. A consistent policy approach to service coordination and access, with greater information being available to both professionals and carers, on service access is required. Importantly, development of a seamless service that prevents gaps in service post discharge from hospital is necessary. It was clear that returning home for some carers meant a gap or no service support and creation of uncertainty as to what services they could access, with some carers drawing on informal networks for information and support. In Australia, federal packages to maintain people with dementia at home are accessed via general practice or post assessment by an Aged Care Assessment Team (ACAT). ACAT teams are tied by the boundaries of the (state funded) local health districts. However, the States also provide, via community health programs, services such as continence support. There are complex regulations guiding access to a Federal package that often preclude access to state based services; as with all systems this is open to local interpretation and resources. In addition, there are private services run by for profit and not for profit groups. This plethora of services is variable by location and is dependent on the ability of both service providers and clients to ascertain what is available, timely and accessible. Community-based services post discharge, as already noted can be difficult to access quickly. As noted by others the importance of support services being in line with current needs was emphasized. Carers, post discharge, felt that it took too long to access/find assistance (Spencer et al., 2013).

Limitations It cannot be concluded that the views expressed by the participants in this study will be shared by other carers of a person with a dementia that have experienced hospitalization. The participants in this study all volunteered and agreed to share their experiences; all had some level of involvement with Alzheimer’s Australia NSW services. This could be a form of ‘elite bias’ where only those carers who wanted to convey problems with the hospital stay, discharge, transitioning back home experience agreed to participate in the study (Sandeloski, 1986). However, given the consistency of views that were expressed about the hospital stay, the very limited experience of planned discharge, the issues encountered on returning home partly as a result of no planned discharge and the complexity and differing interpretations of what different funding packages could deliver independently and in tandem. There is, however, consistency of the findings with previous research, the study suggests that the



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issues raised are indeed significant ones that warrant serious consideration by service planners and health care staff alike.

Conclusion These carers’ experiences provide insight into gaps in service provision, not least the inclusion of family carers in delivering care at home and in the hospital setting. On returning home there is a complex maze of services that are available to support care at home, but ways to access and eligibility for these services is often unknown. Communication in a timely fashion, with carers at the point of pre-hospital discharge, would enable a smooth service transition. Provision of information about available services and their access criteria may serve to modify existing service complexity for carers leading to improved experiences. Acknowledgements The assistance of the following people is acknowledged: Ms Margaret Proctor, University of Canberra for assistance with collection of relevant articles; Mr Brendan Moore, Alzheimer’s Australia NSW, for their feedback on drafts of the literature review; and Prof Diane Gibson, Dean Faculty of Health, University of Canberra for her leadership and mentorship during the course of the study.

Funding This project was supported by a grant from the New South Wales Government Department of Family & Community Services—Ageing, Disability and Home Care.

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Maggie Jamieson is a public health academic at the University of Canberra. She has worked in health services and non-government sectors at an executive level and has been successful in enabling research to be undertaken, and applied to clinical practice. She is experienced in mixed methods research, especially with disenfranchised populations, systematic review and meta-analysis, with translation of research findings into policy and practice being a particular strength. Laurie Grealish is a nurse researcher holding a conjoint appointment with Gold Coast Hospital and Health Service and Griffith University in Queensland Australia. She works in the area of subacute and aged nursing. Dr Grealish has published on dementia and workforce development and is a member of the Griffith Health Institute. Jo-Ann Brown has worked for over 10 years at Alzheimer’s Australia NSW as a researcher with a specialty in dementia care and support. She has played an integral role in the development of consumer-driven social research projects about dementia and translating that research to practice. Brian Draper is an old age psychiatrist and Conjoint Professor, School of Psychiatry, UNSW and Director, Academic Department for Old Age Psychiatry, Prince of Wales Hospital Sydney. He is Board Member of the International Psychogeriatric Association, Chair of the IPA BPSD Shared Interest Group, and Deputy Director of the DCRC-ABC based at UNSW. Dr Draper has published extensively on clinical aspects of dementia and old age mental health including a book for the general public ‘Understanding Alzheimer’s and other Dementias’.


Respite care for people with dementia and their carers.

'It's a huge maze, the system, it's a terrible maze': dementia carers' constructions of navigating health and social care services.

Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions.

The everyday use of assistive technology by people with dementia and their family carers: a qualitative study.

Exploring the views of GPs, people with dementia and their carers on assistive technology: a qualitative study.

Experience of burden in carers of people with dementia on the margins of long-term care.

Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study.

'Singing for the Brain': A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers.

Understanding the needs of carers of people with psychosis in primary care.

The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study.

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

Interprofessional education in the care of people diagnosed with dementia and their carers: a systematic review.

Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study.

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia.

The importance of music for people with dementia: the perspectives of people with dementia, family carers, staff and music therapists.

Exploring experiences of physical activity among people with Alzheimer's disease and their spouse carers: a qualitative study.

Health professional perspectives on systems failures in transitional care for patients with dementia and their carers: a qualitative descriptive study.

Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals.

Expert views on the factors enabling good end of life care for people with dementia: a qualitative study.

Good-quality social care for people with Parkinson's disease: a qualitative study.

The impact of frailty on oral care behavior of older people: a qualitative study.

Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention.

An exploration of the experience of using calendar reminders for people with dementia and family carers.

People with dementia and carers' experiences of dementia care and services: Outcomes of a focus group study.