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

Article

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

Dementia 2015, Vol. 14(6) 769–787 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213511957 dem.sagepub.com

Caroline L Sutcliffe University of Manchester, UK

Brenda Roe University of Manchester, UK; Edge Hill University, UK

Rowan Jasper University of Manchester, UK

David Jolley University of Manchester, UK

David J Challis University of Manchester, UK

Abstract An ageing population and an associated increase in the prevalence of dementia are of increasing concern in the United Kingdom and worldwide. Recently, the United Kingdom and other European countries implemented national dementia strategies to address this. This paper reports on the outcomes of a focus group study involving people with dementia and carers on their experiences of dementia care and support services in relation to government and third sector agencies’ objectives and recommendations. Three focus groups comprising carers and people with dementia (n ¼ 27) were undertaken covering topics related to experiences, service receipt, information sharing and service development. Some participants experienced difficulties or delays in receiving a dementia diagnosis and in accessing appropriate care. The provision of training, timeliness of information, access to appropriate advice, and consistent and flexible services were deemed important. The findings suggest that some issues raised by participants were highlighted in earlier policy objectives and recommendations but remain of central concern. The projected growth in the number of people with dementia coupled with reduced availability of Corresponding author: Caroline L Sutcliffe, Personal Social Services Research Unit, Dover Street Building, University of Manchester, Manchester M13 9PL, UK. Email: [email protected]

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informal care and increased demand for services emphasises the need to transform dementia care in the United Kingdom. Keywords carers, care services, dementia strategy, focus group, diagnosis

Introduction In developed regions of the world, populations are ageing with a third estimated being aged 60 years and over by 2050 (World Health Organisation, 2012; Peace, Wahl, Mollenkopf, & Oswald, 2007). Despite longevity being a success, anxieties abound regarding financial burden on future generations and governments (Phillipson & Baars, 2007). With age there is an increased likelihood of living with long-term conditions, which can be associated with progressive loss of function and disease (Phillips, Ajrouch, & Hillcoat-Nalletamby, 2010). One such condition is dementia, which has an unpredictable disease trajectory starting gradually and lasting typically over several years (Department of Health, 2009a; Mitchell, Kiely, & Hamel, 2004a, Mitchell, Kiely, Hamel, Park, et al., 2004b; Phillips et al., 2010). Survival rates are dependent on when the disease is first diagnosed and can range from less than 2 years to over 16 years (Fleisher & Corey-Bloom, 2010; Rait, Walters, Bottomley, Peterson, & Illiffe, 2010). At the mild stage people can typically manage independently, at the moderate stage some support is required, while with advanced dementia continual help and support may be necessary (Phillips et al., 2010). It is estimated there are 820,000 people in the United Kingdom (UK) diagnosed with dementia with an annual cost of »23 billion (Alzheimer’s Research Trust, 2010) and 35 million people globally, costing US$604 billion worldwide (Wimo, Jo¨nsson, Bond, Prince, & Winblad, 2013). Most people with dementia also have co-morbidities (National Audit Office [NAO], 2007), and in advanced stages present with complex physical and psychological needs (Sampson et al., 2008). They are also at higher risk of being hospitalised or requiring admission to care homes (Alzheimer’s Research Trust, 2010; Lindstrom et al., 2011). Dementia and dementia care have historically been neglected areas in terms of care and research, with a lack of access to diagnosis and interest by some physicians (Department of Health, 2001; Innes, 2002; NAO, 2007). Having dementia has been thought of as a ‘living death’ (Downs, 2011), with access to quality care essential and improved quality of life required for those with dementia and their carers (Hughes & Baldwin, 2006). Thankfully, there has been a ‘sea change’ and UK and other European governments are now developing and implementing national strategies for the detection, treatment and prevention of dementia (Department of Health, 2009a, 2011; Ministry of Health Welfare and Sports, 2008; NAO, 2010; Norwegian Ministry of Health and Care Services, 2007; Republique Francaise, 2008). In the years leading up to the National Dementia Strategy (NDS) for England a number of reports highlighted shortcomings and made recommendations to improve dementia care (Audit Commission, 2002; Department of Health, 2001; Knapp et al., 2007; National Institute for Health and Clinical Excellence and Social Care Institute for Excellence [NICE/SCIE], 2006). For people with dementia living in the community, the majority of care and support is provided by unpaid family carers, predominantly female (Knapp et al., 2007). Taking on


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such responsibilities for care, supervision and decision making for a relative with dementia is estimated to substantially save public funds (NAO, 2007), with care being provided in the home until the more advanced stages when admission to a care home is required. Furthermore, the effects of the emotional strain of coping with changes in the person as the disease progresses have been well documented (Moriarty & Webb, 2000; Ornstein & Gaugler, 2012; Zarit & Edwards, 2008). This paper reports on the outcomes of a focus group study undertaken in England, which formed part of a larger European Union funded prospective cohort study – RightTimePlaceCare (2010–2013), conducted in eight countries (Estonia, Finland, France, Germany, the Netherlands, Sweden, Spain and England) geographically spread across Europe. The study design and protocol have been published elsewhere (Verbeek et al., 2012). We report the national findings from focus groups carried out involving older people with dementia and carers on their experiences, including receipt of health and social services and use of voluntary sector agencies. The aim of the paper is to present the views and opinions of people with dementia and carers on a range of topics including: their positive and negative experiences of dementia care; access to information and its communication; and suggestions to improve dementia care and to discuss these in relation to UK government and third sector agencies’ objectives and strategies.

Method Samples Participants in the focus groups were recruited by group organisers in three localities of North West England and through the websites of carer groups for people with dementia in these local areas. In order to generate a sample of at least 20 focus group members, three focus groups were planned involving one from each of the three localities. This allowed for 6–10 participants in each focus group (Kitzinger, 1995; Morgan, 1993). Ethics approval was granted via the National Research Ethics Service, North West 5 Research Ethics Committee (11/NW/0003) for the project as a whole, which included ethical approval for the focus group component.

Data collection Focus groups were held during January 2012. In order to reduce the likelihood of drop-outs to the focus groups, the project team arranged to carry out the meetings at the carer group premises; however, all three groups were well attended. All three meetings were conducted in rooms that were otherwise quiet and free from distractions and were digitally recorded. Two of these were held prior to the groups’ usual monthly meeting to ensure that care group members were free to attend the focus group if they wished to participate, and to save them a further specific journey. A few weeks prior to the focus group meetings, the care group organisers were sent information about the study, and information sheets about the focus group meeting to pass onto group members who were interested in participation. Copies of the information sheets and informed consent sheets were taken to the meeting and time set aside beforehand, in order for members of the project team to speak to group participants to explain the proceedings, answer any questions, and for participants to read information sheets and sign consent forms. Participants were assured that their data would be confidential and


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that any direct quotes would remain anonymous. For any group members who did not have capacity to sign for themselves, their informal carer signed as a personal consultee on their behalf (Department of Health, 2008). Everybody completed a demographic sheet providing background details of the participant and their cared-for relative. All participants were willing to complete these. Participants were informed of the expected length of the focus group, around one hour, and that the meeting would be recorded, to which there were no objections. Each focus group was led by a facilitator and an observer took notes and details of the seating plan for participants. A semi-structured discussion guide was used at each of the three focus groups. Topics included: care services and support; communication and information sharing; their experiences; and suggestions for the development of services. The facilitator gave a short introduction to describe the purpose of the meeting to participants. Following the focus group, participants were provided with »20 shopping vouchers in recognition of their contribution.

Analysis The digital recordings were professionally transcribed and the transcripts reviewed against the recordings for accuracy and missing information by one of the research team who had attended each of the focus groups. The completed and validated transcripts were read by all members of the research team. Reliability of the analysis was assured by independent reading of the focus group transcripts and subsequent discussions by two members of the research team who identified the relevant themes and sub-themes using content analysis (Stevens, 1996). To assure rigour, data were coded into key themes and any disagreements were discussed and resolved by reviewing the transcripts together. The themes and subthemes were considered and agreed by three members of the research team until saturation of the data was reached. Socio-demographic and background information relating to the carers and service users was also analysed and presented as frequency distributions.

Findings Twenty-seven people attended the focus groups. Group A was attended by eight members including two ‘silent’ members. Both were people with dementia who were unable to contribute due to significant impairments which hindered their involvement, but whose carers were active participants. There were four persons with dementia and four carers: two spouses and two daughters. In Group B, nine members attended with one ‘silent’ member with dementia. This person appeared to prefer a listening role but his eye contact and attentiveness demonstrated he was following the discussion and while not contributing, did not dissent. There were seven people with dementia and two carers, both spouses. In Group C, ten members and two support workers attended. This group was purely carers, all of whom were spouses. Some were ex-carers whose relatives had recently died, but they were still supported by the carer group. None of the people who attended represented Black or Minority Ethnic groups. Table 1 illustrates the age range, gender, duration of memory problems and living situation, reported for the group as a whole, and for people with dementia and carers separately where appropriate. In total, there were 10 males and 17 females. The duration of memory problems in the people with dementia ranged from 12 months to 10 years. The same format was adhered to at each of the three focus groups, with


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Table 1. Focus groups – participant details Participants

Age (years)

Gender

Group A (n ¼ 8): PwD Carers Group B (n ¼ 9): PwD Carers Group C (n ¼ 10):

58–94 71–94 58–73 54–80 54–80 71–74

3m 2m 1m 5m 4m 1m

Carers PwD (not present) Total (A, B, C)

64–87 65–87 54–94

PwD Carers

54–94 58–87

5f 2f 3f 4f 3f 1f

2 m 8f (8 m 2f) 10 m 17f

Duration of memory problems (range)

Living situation

18 months–7 years

8 at home

12 months–8/9 years

9 at home

2 years–10 years

6 at home 4 care home

12 months–10 years

23 at home 4 care home

PwD: person with dementia; m: male; f: female.

a facilitator following a question guide covering a number of topics. These were subsequently grouped into relevant themes which are discussed in the following sections.

Experiences Diagnosis. Across the three focus groups there was a wide range of perspectives from carers about their experiences of receiving a diagnosis for their relatives, both positive and negative. People with dementia also provided detailed accounts of how they had dealt with getting a diagnosis. A feature of most of these comments regardless of their overall experience appears to be the length of time it took to achieve an accurate diagnosis (see Table 2, Quote 1), also indicated below: Well the only way we found out she had dementia, my wife . . . was through the brain scan . . . and then I went to see the doctor just with myself to try and find things out, - ‘oh yes she’s got dementia’, and that’s it, that’s how I found out. Previous to that she’d been treated for depression and anxiety, which you know, I know different now. So it’s not very . . . it’s not brilliant . . . . (Carer, Group C)

Some respondents resorted to paying for private care in order to receive a timely diagnosis as illustrated by this quote: I didn’t get any help at all. He just said that my husband had depression. In the finish and because I kept going back . . . and anyway it wasn’t . . . and I ended up having to pay for a specialist to get him referred to try and get him a diagnosis . . . We didn’t get any help at all. I didn’t get sent anywhere . . . . (Carer, Group C)

A participant who had a diagnosis of dementia recounted her negative experience of visiting her General Practitioner (GP) (Table 2, Quote 2). This was in contrast to another respondent with dementia whose own experience was more positive (Table 2, Quote 3), and which he put


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Table 2. Focus group participant quotes – experiences Focus Group

Quote

Quote 1, Carer, Group A

. . . we’ve been in our house 41 years and he didn’t know where to put things and that was another sign. So after about three years. I went to the doctors . . . so it was a case of, ‘as you get older your memory does start to fail a bit’, and I accept what doctors say . . . so after 12 months I went back . . . same story with a different doctor, and then the third year I went back, and this time I was really concerned . . . So we went eventually to see this psychiatrist . . . and he said, ‘your husband doesn’t have dementia or Alzheimer’s’. I thought, there’s something wrong, and we went privately . . . [the doctor] took D— in . . . for half an hour, talked to him, and then he said, ‘I think I know what’s wrong with your husband, I need some more tests’ . . . So we went to the A* [private hospital] and within a fortnight we’d gone back to him and it was vascular dementia and of course, that was it When I went to the doctors to tell her that I knew that I’d got Alzheimer’s she just said, – ‘there is nothing wrong with you’ . . . It didn’t worry me . . . No, because I knew exactly what it was . . . Oh yes and then I went to Hospital and again they turned round and said, – ‘there’s nothing wrong with you’, and I knew there was and it was so frustrating, I don’t argue with them because there’s no point is there? . . . I knew very well before because of my father in law, I researched it for him, so I knew the very beginning signs of it . . . sat next to my family doctor was a young lady who was . . . a qualified doctor, but assistant to a Consultant, just across the road in S* [name of hospital] . . . and she said [to his family doctor] ‘oh no, no, no.., don’t be in too much of a rush, I think Mr C* [name of participant], he has probably got Alzheimer’s, and you don’t have to make a decision now, but it is so fortunate that you are within walking distance, and as his assistant, I can recommend him and, you can come back again’ . . . and that was it, I did a quick test of all the questions that we had to ask . . ., came back with the report and I was, an Alzheimer, not just an old whatsit . . . Well my husband has been given one day, day care. Now the first day he went with a social worker for a trial. Half past eleven she rang and said ‘he’s not settled, he’s got a bad head, he wants to come home’. I said, - just leave him a bit longer because this is his condition, if I’m not there, he gets this terrible head . . . it’s anxiety. She said, ‘well we’ll leave him a bit longer then’, and when she went to pick him up at half past three he was dancing with the rest of the residents. Perfectly enjoying himself. So they gave me a full day on a Saturday, he went with the driver . . ., and I got a phone call at quarter to eleven to say he’s got this terrible head and wanted to come home and he was bringing him home. So I said, – can you not keep him a bit longer? – ‘no he’s got to come home, it’s his will, he’s got to come home’. So he brought him home. What good’s that to me? . . . about direct payments . . . it’s like nothing is straight forward . . . you give a job description for what you want so people apply. Now, bearing in mind that these people have a diagnosis of dementia, one of the applicants I got had got a previous conviction for assault. Now you think, the person that you’ve got that needs that help to go for walks and stuff, it just wasn’t happening, . . . So it’s just this constant thing . . . not getting what’s needed

Quote 2, PwD, Group B


Quote 4, Carer, Group C


PwD: person with dementia.


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down to a degree of luck, or good fortune, which was a recurrent theme of many respondents. Both carers and people with dementia believed that getting a diagnosis depended on who you consulted or where you lived; if you were lucky you saw an informed GP or doctor as illustrated below: . . . when you are first diagnosed with dementia.., I was very lucky because somebody came to . . . I went to the doctor then someone came from [name of hospital] to see me . . . So it all depends I think, who you get to see from the health service . . . . (Person with dementia, Group B)

With regard to the diagnosis of dementia, or the illness itself, there were interesting contrasts between the comments from carers and those of people with dementia. It may be that the comments from carers were in relation to people at later stages of the illness; however, it appeared that carers were far more negative about the disease than those who were diagnosed with it. . . . what I felt was that I was looking at a future that I didn’t want to know about. It was the knowledge that all the examples that we were being given of people who were further on down this road and, alright so eventually we would probably arrive at that point and that’s where we’re put, but the more you can do to slow it all down the better . . . . (Carer, Group B) . . . the fact that I have got it [Alzheimer’s] . . . that fact you have got that condition, but. it has never struck me as a kind of, smear or . . . negative thing . . . . (Person with dementia, Group B) I’m quite happy to have Alzheimer’s, there’s worse things to have than Alzheimer’s . . . I can cope with it. I wouldn’t like to have other things . . . I think I’m lucky to have this rather than something worse than this. (Person with dementia, Group B)

Support services. Many carers had experienced problems in accessing services, getting them in place and receiving services that were appropriate to their needs and those of their relatives with dementia. One carer had received aids and adaptations for his house including a wet room, stair-lift and wheelchair but struggled to get formal caregivers to understand his wife’s problems. Similarly, others were in receipt of statutory services which they valued, but these did not fully meet their needs. Participants mentioned problems with assessment of needs, service reliability and the use of direct payments (see Table 2, Quotes 4 and 5 and below). . . . but he [husband with dementia] had to go in an ambulance, he could get picked up at twenty past eight, half past nine, quarter to eleven, so effectively . . . and they would never tell me when he was going to be collected, and . . . I couldn’t make an appointment for a doctor, dentist and some of those times my brother was in hospital . . . so I had to wait to run out to get down to see him. (Carer, Group C)

Other issues cited were in relation to staff changes or absenteeism, whereby regular staff members were suddenly no longer available as expressed below: I had one visit from a nurse . . . she broke her ankle and that was it, there wasn’t anyone else to take her place you see. I mean she went out of her way to bring me some pamphlets and stuff but it never went any further . . . . (Carer, Group C) Another thing that is important is that staff get promoted, and everything, you can get a really trusted one person and you’re taking advice and then without any warning, they’ve gone. (Person with dementia, Group A)


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Some carers had positive experiences of care services, for example. the use of direct payments towards a regular stay in a hotel that catered for older people with mental health needs as indicated by: I had direct payments and taking respite as well. I was using it for the B- Hotel because it worked. Every other month I’d pay so much of that money for R-’s [name of wife] amount and I’d pay for my own self, which I was quite happy about . . . That has worked for quite a few years now. (Carer, Group C)

Carer stress. Many carers raised the topic of carer burden or stress when discussing their experiences, and its impact upon them. Some expressed feelings of guilt about sending their spouse for respite. Words such as ‘struggle’ and ‘uphill fight’ were used in relation to access to help and services. Other aspects of carer burden were in relation to lack of support and loneliness: . . . the memory has gone, I mean we talk about our past holidays or the boys . . . and sometimes, well he doesn’t know the two lads or his grandchildren. And it’s lonely . . . it’s lonely. (Carer, Group A) If you’ve got somebody that’s very fit, it’s really horrendous, especially if you’ve got no family to support you . . . . (Carer, Group C) . . . but I don’t know in six months, and it’s all these different worries and you say you don’t worry about them, but they are there, all the time . . . because some days you just feel like walking out of the house. You could put your coat on and just go . . . . (Carer, Group C)

Care service receipt Carers and their relatives with dementia were being supported by a mix of statutory healthcare, services provided by the local authority and voluntary organisations. People with dementia used memory clinics, old age mental health services, specialist dementia day care services and a resource centre jointly run by council and private enterprise. Carers also used a mix of statutory and voluntary agencies, in many cases these were generally the same organisations that supported their relatives with dementia. These included a community hospital incorporating a National Health Service (NHS) mental healthcare unit and dementia resource centre. Many received carer support from voluntary agencies such as Crossroads and Alzheimer’s Society, as well as a dementia cafe. User and carer support services were viewed positively and particularly valued by both people with dementia and carers. One respondent described the joint-run resource centre: . . .I think it is a fantastic place to get people, it is a lovely warm environment, but it is nice to meet up with other people . . . . (Person with dementia, Group B) . . .I’d heard about this place . . . the Carers Centre, so I just thought I’ll bob in, I’ll go in there and that was my saviour. They were marvellous . . . S—[manager at carer centre] was absolutely fantastic. She had the dementia advisors come to see me at home, then they got me my own social worker who was fantastic, absolutely . . . . (Carer, Group A)

Services working well and valued. Focus group participants were asked to describe any assistance or services that they received which they felt provided good support. There was


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Table 3. Focus group participant quotes – service receipt, awareness and suggested improvements Focus Group

Quote


Well our GP was very good. When I took my husband to see the GP and on the second visit about getting forgetful, I was going to ask if he could tell me what I could do, if I could go to any special service or anything you know . . . so he said, - ‘I think I’ll refer you to the memory service’, so, you know, I thought that was excellent, he seemed to be really on the ball but I know they’re not all the same . . . If you looked at the kinds of services that care homes and places, they concentrate on, food hygiene, how to lift people, how to deal with things that they call aggression, toilet training, there’s not much about caring and . . . I think that’s probably the least expensive resource to supply, but people need to be trained and helped to understand why so many of them suffer stress . . . I think there’s a great deal to be done in that respect . . . We can probably generate an awareness which would considerably exceed the need that is likely to be serviced by voluntary organisations, and also undermine the capacity of the good interactional work that reasonably designed social groups do which is so valuable. There are big conflicts here. There’s no case against saying ‘well we won’t pretend it doesn’t exist’, there’s every case for trying to make things better, but we do have to acknowledge that there is a serious resource question . . .



PwD: person with dementia.

praise for both statutory care services and voluntary agencies; a participant recounted being able to care for her husband at mealtimes when he was in hospital. Specialist day care services and individualised personal support from dementia support workers were also valued particularly with regard to the speed of referral to another service, or where services seemed to be well integrated (see Table 3, Quote 1). An aspect that emerged from the comments was the value of being able to access help when needed as indicated below: Well I know that I can ring R—’s [care support worker] number. If I’ve got a problem, I’ll ring her up . . . . (Person with dementia, Group A) We’ve got several phone numbers . . . we once had to go back to [old age mental health service] just for some help and advice, when we went there, – ‘I’ll give you a phone number, any time you want help ring up’, I rang up in the morning and we saw somebody in the afternoon . . . . (Carer, Group A)

Many carers valued: having people who were knowledgeable and understood their relative’s condition; services that allowed them to take a break from their caring role and being part of a carer support group. R- [wife with dementia] spent a lot of time in, what is it, memory clinic and they are excellent because they are trained, they’ve got the knowledge. So you’re talking to people who have dealt with people, properly . . . people living with the situation, the carer plus the person who’s poorly. (Carer, Group C) . . .a good thing that sorted me for a long time was going to a hotel in [name of seaside town] . . . which caters for people with problems and the staff there are great and what that does, it gives you a break. You don’t have to think about doing her breakfast, you don’t have to think about doing her dinner . . . . (Carer, Group C)


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I would say this group is a most invaluable group . . . because it, it does give a chance . . . it gives motive for getting out, it gives a feeling at the end that you may have said something useful or done something useful. (Person with dementia, Group B)

Services not working well. Participants were asked to describe types of support or services that they thought were not working well, and in contrast, these far outweighed the number of positive comments about services as discussed above. Some of these were about specific services or care, such as the lack of availability of respite beds, home care that was not suited to the recipients’ needs or negative experiences with GPs. Likewise the people that you pay for, a lot of people have to pay for, for instance . . . homecare and they clean the bits that you could do it yourself rather than what you’ve asked them to. What I’m saying is it’s a job contract isn’t it? They should do it . . . . (Carer, Group C)

Some views were in relation to a perceived poor response to their or their relatives’ needs, or poor communication, or even a lack of time or a lack of personnel to deal with their problems. Other criticisms tended to be in respect of a failure of systems or lack of communication between services and individual staff. . . .the thing is, you get a care plan individualised - but it doesn’t happen. They even put things on a care plan and they don’t employ anybody to do it, so it’s just a piece of paper that someone fills in . . . If they don’t employ anybody to do it, it’s a complete waste of time . . . . (Carer, Group C) . . .but it’s actually the referral, and it’s the actual NHS side that we’ve had the problems with, because the referral seems to have got lost . . . in the system (laughs), I used to work in the NHS so I know the system but, I don’t know where it’s gone . . . . (Carer, Group A)

Timeliness of service response. Another theme emerged in relation to timeliness of access to support and services. There was discussion around the point at which carers and people with dementia would need more help or access to services. Many felt that they were not yet at that point, or found it difficult to know at what stage they should seek further help: . . .the question in my mind sometimes is, at what point do you actually get more involved? In that, you don’t want to leave things until it’s too late. You want to make preparations, hoping you never need them, but knowing you probably will . . . but it’s a question of when do you get involved and things like that. (Carer, Group A)

A person with dementia helped out at a resource centre but was clear that she did not feel ready to attend as a ‘patient’ there. There was general agreement from others in the focus group on this point: There’s a sense in which E- is correct when she says she’s not ready for that yet . . . and I think that is the situation here for most of us., but it is out there., and we are going to need it, but not necessarily just yet. (Person with dementia, Group B)

Furthermore, there was the view that support and services needed to be available at the appropriate time to meet the care needs of both parties. There needs to be a range of services offered at the right time to both. [carer and person with dementia] . . . . (Carer, Group A)


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Information and communication Lack of information or not knowing where to access information, and poor communication were experienced by some carers, with GPs and generic care workers attracting criticism: . . . you’re told in quite a blunt manner which is, sometimes I can understand that because it’s very hard to say someone’s got an illness but, after that the process is very poor of information . . . . (Carer, Group C) . . . Social workers . . . they probably try their best but it’s a lot easier to pass you round . . . I think it was very poor personally. It was lack of information. They didn’t have the knowledge to talk to you. They didn’t understand basically what you were saying and I think a lot of this stems . . . if they do not understand the complaint and what it is . . . . (Carer, Group C)

Receipt of information was not always valued as a positive experience, due to the emotional effect of learning about dementia as illustrated by the following: . . .when G [husband] was first diagnosed and I came here to [dementia resource centre] . . . I think it was eleven or twelve [weeks].., it was quite a long information thing, learning about caring. I found it at that time incredibly depressing because you were looking at varying patterns and it was all sorts of scientific things as well . . . . (Carer, Group B)

Some carers felt that information was available from their general practice and day care centre: . . .while I waited in the surgery . . . it’s all over one wall, it’s all there . . . In my GP’s surgery there’s two or three addresses as well as the Alzheimer’s Society . . . I actually think that it is out there, I think the information is out there . . . . (Carer, Group B) . . . there’s an area there that when you want information you can go in because, it’s a Tuesday afternoon, I think it is, from a certain time you can go into that little room and you can access information and talk to somebody there . . . . (Carer, Group A)

Both carers and those with a diagnosis of dementia suggested that provision of information from a single source would be preferable: In the pathway to dementia, what we need is a one stop place where you can talk to people about the whole subject, what you need, and you know with these things they change fast. (Carer, Group C)

Public information and awareness. Many respondents were keen to raise the profile of dementia and issues relating to care, at a wider level among the general public and media, and more specifically among professionals and both informal and formal carers to increase knowledge about the disease. There had recently been a series of television and radio adverts transmitted regarding the early symptoms of dementia and the general consensus was that these were a good idea. There was disagreement between a carer and person with dementia as to the use of the term dementia as illustrated by this dialogue: . . . and nationally, and in the community as well at local level . . . it has to be an awareness at many different levels to be able to be a safety net . . . . (Carer, Group A) You’ve got the word, awareness . . . and it’s got to be done in simple terminology because general people wouldn’t even know what dementia was or what the background was . . . . (Person with dementia, Group A)


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Yes, and there’s a problem with the word as well. There’s a serious problem with the word., because people go, - whoa, and it’s actually much kinder if people refer to it as a problem with memory . . . . (Carer, Group A) Ah well, I think that’s too simple. I’m sorry but I do. (Person with dementia, Group A)

Some respondents felt that advances in awareness of the causes and treatment of dementia had led to improvements in the way that doctors managed the illness: I get the impression that the doctors are.., there is a greater awareness now that there are things happening . . . that doctors are meeting up with conversations on causes. It wasn’t here sort of two and a half years ago . . . but I feel there’s an improvement. (Person with dementia, Group B)

As noted earlier, both carers and people with dementia believed that luck or chance was a factor in getting access to knowledgeable professionals and appropriate information depending on who you consulted or where you lived: . . . the GP who dealt with it . . . she’s worked in [old age psychiatry] as part of her training so she’s very aware of it and we’ve been lucky up to now anyway . . . . (Carer, Group A) We were very fortunate with our [name of town] big emporium of all the services, I think it was all . . . a very wide range of social services were there . . . . (Person with dementia, Group B)

There was, however, a perception of a lack of awareness in professional staff, carers and the public generally about dementia as evidenced by this quote: They have limited experience of Alzheimer’s or vascular dementia and what have you. I mean, she’s an excellent doctor, but she’s lacking in certain areas, not her fault, she just doesn’t have the time . . . . (Person with dementia, Group B)

Suggested improvements to dementia care Participants suggested ways in which dementia care could be improved to benefit their lives. Some wanted better availability of overnight respite care in a regular setting as illustrated below: I would need a care bed that I could access say four, five times a year to give me a break like that, and know that there was a bed there at a place that I know D [husband] is familiar with. Not, – ‘oh there’s one here’, or ‘there’s one there’. (Carer, Group A)

A further suggestion was for local communities to be consulted about service provision, and to involve people with dementia and their carers as expert speakers and in decision making. Some comments were more specific, for example, in respect of particular nursing or care services, or dementia training for formal caregivers and hospital staff. Improvements to certain care practices or more availability of services were cited by some participants: . . .even having my hair done . . . or meeting a friend and having a cup of tea. Just things that other people take for granted, something that makes you feel like a human being, because a lot of carers put their own health on the back burner and they shouldn’t and that should be written into the care plan that people do have time . . . . (Carer, Group C) . . .thinking about the MacMillan Nurses and the Admiral Nurses, the Admiral Nurse is for dementia . . . because you see there are so many people with dementia now, and it’s going to increase, that we need these Admiral Nurses now . . . . (Carer, Group A)


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The provision of dementia training to carers, hospital staff and care home staff was viewed as being particularly important (also see Table 3, Quote 2 and below). . . . that people in dementia care understand what it is, dementia is, and Alzheimer’s. More training basically.., And obviously they need a better rate of pay to get that sort of person. (Carer, Group C)

Discussion A number of factors were identified by focus group respondents which highlighted both positive and negative features of dementia care practice. The most salient of these factors related to: prompt diagnosis; carer support and breaks; training; a single point of contact; and information and awareness. Each of these is discussed below and appraised in relation to objectives, strategies and recommendations for dementia care by government and third sector agencies.

Prompt diagnosis Many group members recounted their experiences regarding the initial contact with primary care and GPs. These were extremely variable and illustrated that, whilst some professionals were well informed and supportive, there was evidence of poor communication and misdiagnosis. A lack of prompt diagnosis by primary care physicians has been previously reported internationally (Vernooij-Dassen et al., 2005) and attributed to reluctance to diagnose due to the possible stigma attached to the disease and pessimism about prognosis and outcome. The latter reason was also identified as a barrier to early diagnosis especially among older GPs in England (Ahmad, Orrell, Iliffe, & Gracie, 2010).

Carer support and breaks A second theme for carers of people with dementia was the need for readily accessible breaks, consistent and flexible services, and respite care in a predictable place where the person with dementia was comfortable and the carer felt secure in the knowledge of this. There was a mixed response regarding the use of direct payments. Although personal budgets have been seen as a way of providing flexibility in service use, older people with dementia face barriers to access, or find them unsuitable (Alzheimer’s Society, 2012; Glendinning et al., 2008). Many carers experienced stress and strain affecting their emotional health as a consequence of supporting a relative with dementia. UK research found that carers using day care or respite services especially at an earlier stage, experienced a reduction in stress and negative psychological symptoms, and they supported the older person with dementia at home for longer (Chu, Edwards, Levin, & Thomson, 2000; Pickard, 2004). However, systematic reviews have found either no such effect on delayed admission (Mason et al., 2007) or even an increased rate of admission (Shaw et al., 2009). An objective of the NDS in 2009 was the development of flexible and responsive carer breaks and additional NHS funding for psychological therapies and support (Department of Health, 2012). Nevertheless, availability of good quality respite care still remains patchy or nonexistent in some areas (Alzheimer’s Society, 2012).


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Training A third theme to emerge was the quality of care for people with dementia in acute hospitals, domiciliary care and care homes, which participants generally perceived as poor. Training was seen as an important vehicle to improve this emerging as a concern from both older people and their carers. An informed and effective workforce, which is a key objective of the NDS for England and better training of hospital healthcare assistants, service providers and care home staff are central tenets of many national recommendations. In addition, with GPs regarded as ‘gatekeepers’ to continued care and treatment, better quality training and a multidisciplinary team approach in general practice have also been widely advocated (All-Party Parliamentary Group (APPG) on Dementia, 2012; Alzheimer’s Society, 2012; Department of Health, 2012; Health Foundation, 2011).

Single point of contact and continuity of care The fourth theme was the need for integrated services with a single point of contact for access to care and support. One objective of the NDS was the implementation of a dementia adviser service to enable access to care, support and advice throughout the course of the illness (Department of Health, 2009b). The efficacy of the service is still being evaluated and no formal model for the dementia adviser service currently exists. There is concern that there are insufficient resources for this service to cater for the level of demand in England and additional investment will be required (APPG on Dementia, 2012). Many people had positive experiences of memory services and there is some evidence that basing these within primary care can provide integrated professional support and continuity of care and be cost-effective (Greening, Greaves, Greaves, & Jolley, 2009; Jolley, Greaves, Greaves, & Greening, 2010).

Information and awareness The fifth theme was in respect of better provision of information and communication following a diagnosis of dementia, but more importantly, the timeliness of information; getting access to advice and assistance at the appropriate time and place for that stage of the illness. People also wanted information from one single place, or an ‘index’ or directory of services. The promotion of local, timely information and support and online services have been key government commitments (Department of Health, 2009a, 2010, 2012; NHS Choices, 2010). However, surveys conducted during this time found around a third of carers and people with dementia felt they had received insufficient information about services (Alzheimer’s Society, 2008, 2012). A similar picture of inadequate provision of information also emerges in European research (Georges et al., 2008). There was a clear need to improve awareness of dementia in order to facilitate early diagnosis and access to support. Better public and professional awareness of dementia using a public information campaign was advocated by government and the voluntary sector as a way of improving timely diagnosis (Alzheimer’s Society, 2012; Department of Health, 2009a) and recent media coverage was viewed positively by focus group members. However, publicity needs to be sustained in order for it to be effective (APPG on Dementia, 2012).


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Limitations The focus groups were conducted in discrete areas of North West England and were thus limited to a geographical area of the country and may not represent all users and carers of dementia services, or take account of national variability and service availability. The participants were recruited from local carer support groups and consequently were already receiving professional and/or peer support. However, being members of such groups meant that participants were particularly keen to contribute to the discussions which permitted people with dementia and carers to voice opinions and views from each of their perspectives.

Conclusions The range of issues raised by focus group participants by and large seemed to concur with those raised by other similar consulted groups and highlighted in recent policy objectives and recommendations (Department of Health, 2009a). These focus groups were undertaken in early 2012, 6 years after national reports first drew attention to these concerns (Knapp et al., 2007; NAO, 2007; NICE/SCIE, 2006; Wanless, 2006) and 3 years after publication of the NDS for England. The findings suggest that these issues remain highly salient and many of the recommendations and proposals are still yet to be fully implemented or embarked upon. Of other European countries that have national dementia plans, many have also been recently introduced (see the Alzheimer Europe website: http://www.alzheimer-europe.org/EN/Policyin-Practice2/National-Dementia-Plans). It remains to be seen how easy it will be to transform dementia care and support in England if the required infrastructure and systems are not in place, and particularly as health and social care organisations are experiencing reorganisation and budgetary constraints (Banerjee, 2012). Nevertheless, a projected growth in the number of people with dementia in the UK (Knapp et al., 2007) coupled with a decline in the availability of informal care will impact on demand for formal services (Wittenberg et al., 2006) underlining the need for transformation of dementia care. In the United States, the financial cost of dementia to society has been estimated as similar to that of heart disease and cancer (Hurd, Martorell, Delavande, Mullen, & Langa, 2013) and in the UK the cost is reported to exceed this (Health Foundation, 2011). Thus the challenge facing policy makers is a situation quite apparent to one participant with dementia (see in full, Table 3, Quote 3): There’s no case against saying ‘well we won’t pretend it doesn’t exist’, there’s every case for trying to make things better . . . but we do have to acknowledge that there is a serious resource question . . ..

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a grant from the European Commission within the 7th framework programme (Contract number HEALTH-F3-2010-242153).


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Author Biographies Caroline L Sutcliffe is a Research Associate with a psychology background. Her research interests encompass a broad area of study including residential and nursing home care, health and community care of older people with mental health problems and people with dementia and their carers.


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Brenda Roe is a Professor of Health Research, EPRC, Edge Hill University and Honorary Fellow, PSSRU, University of Manchester. Her research interests include health and social care, organisation and service delivery and people’s experiences of living with chronic conditions in a variety of institutional, community and care home settings. Recent projects have included incontinence, falls, dementia, quality of life, end of life and partnerships with older people. Rowan Jasper has a psychology background and has worked on a number of research projects, including prisoner mental health and pain management in arthritis studies. She is currently involved in research in mental health and social care settings on staff wellbeing and the care of older people. David Jolley is a Consultant Psychiatrist working with older people. Currently, Honorary Reader PSSRU, University of Manchester, Consultant Willow Wood Hospice and Gnosall Memory Service. David J Challis is a Professor of Community Care Research, Director of PSSRU, University of Manchester and Associate Director of the National Institute for Health Research (NIHR) School for Social Care Research. He is responsible for a range of research studies and policy evaluations in health and social care in the UK and other countries.


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