Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Inclusion criteria

We included studies involving PLWD who had an additional comorbid health condition. Although we included all types of comorbidities there was a particular focus on our three exemplar comorbid medical conditions: diabetes, stroke and VI. We focused on community-dwelling participants and excluded studies in long-term care settings. We looked for studies relating to the prevalence of comorbidities in people with dementia or cognitive impairment; current systems, structures and other issues relating to service organisation and delivery; patient and carer experiences; and the experiences and attitudes of service providers. We included all study types including systematic reviews, randomised controlled trials (RCTs), controlled studies, observation studies and qualitative studies using any recognisable qualitative methodology. In addition, we included non-research items such as clinical guidelines. We excluded studies disseminated in languages other than English.

Inclusion and exclusion criteria for people with dementia and family carers

Nominal group technique

To structure the discussion and rank the importance of the findings and their relevance for service improvement and delivery we used a nominal group technique. A nominal group technique is a process that promotes the generation of ideas to develop a set of prioritised ideas/recommendations, enabling the participation of all group members and preventing the domination of one or two participants in the discussion. The process involves four stages: (1) the generation of ideas, (2) the recording of ideas, (3) discussing ideas and (4) prioritising ideas. 86,87 The nominal group technique was used to enable stakeholders, including members of the public, to meaningfully participate in the development of ideas/recommendations.

Participants were split into four groups (seven to nine participants in each) based on their area of specialty (i.e. stroke, diabetes, VI, general practice). Two service user representatives were placed in each group, one from the Public Involvement in Research Group at the University of Hertfordshire and the other from a dementia voluntary organisation (e.g. Alzheimer’s Society, Dementia UK). Each group included two members of the research team, one to facilitate the group and one to take notes. The facilitator directed the discussion and focused attention on achieving a common understanding of the questions and their answers.

Based on the evidence presented and their own experiences, participants were asked to consider what changes they would recommend to improve care for people with dementia and comorbidity. They were told that this could be general or specific to one of the three target comorbidities. To stimulate free thinking of ideas, participants were told that no ideas were bad ideas and that they should not be restricted by cost, current systems or time frames. They were told that ideas/recommendations could be easily achievable or could be challenging to implement. To encourage a quick generation of ideas, participants had just 10 minutes to write their ideas/recommendations onto the ideas templates (see Appendix 3). The template required participants to name their idea, give a brief explanation and identify the barriers to and facilitators of the idea/recommendation.

After the generation of ideas, the group moderator asked the participants one by one to share one of their ideas/recommendations and these were recorded by the note taker. Each idea/recommendation was discussed, specifically focusing around how these concepts could be developed and implemented. The participants discussed and prioritised the ideas and decided which two they would present to the wider group. The note taker recorded the two ideas (agreed by the group) on large A3 templates in the centre of the table. These were discussed further to develop the ideas more fully (name the idea, explain the idea, benefits, barriers). Finally, the conference facilitator consolidated the ideas/recommendations by asking each of the tables (diabetes, stroke, VI and general practice) to put forward their ‘best idea’ to the larger group. Ideas/recommendations were discussed and recorded on a flip chart at the front of the room.

After the meeting ideas were summarised and grouped around key ideas or themes, such as integration, information sharing, carer support and education and training. They were also categorised into whether they related to primary or secondary care and if they were specific to one of our comorbidities. A report of the findings from the consensus meeting was circulated to all participants for feedback.

The development of ideas/recommendations

The findings of the scoping review, the results of the interviews and focus groups, and the outputs from the consensus meeting were used as a basis to map current models of care and to identify interventions that had the potential to support continuity and equity of access to care for people with dementia and comorbidity. After this mapping we ran searches in PubMed, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects and Google Scholar to identify systematic reviews evaluating the models of care identified (e.g. case management, carer support, integration) (see Appendix 1 for search terms). From this we developed ideas/recommendations about how services should engage with PLWD and their carers, indicators of quality that could inform the commissioning of services for older people and specialty-specific guidance on assessment and decision-making.

Patient and public involvement

A well-established Public Involvement in Research Group at the University of Hertfordshire has a broad membership of service users and carers. A member of this group chaired the project Advisory Group. In addition, three members of the Public Involvement in Research Group were part of a study User Reference Group. This group was involved in guiding the development of the interview schedule, guiding and challenging our interpretation of the qualitative findings and facilitating understanding of the implications for continuity from a service user perspective. Four members of the Public Involvement in Research Group attended the consensus conference in phase 3.

Diabetes

Thirteen studies reported the prevalence of diabetes in populations of people with dementia2,12,14,91,118,119,121,127,128,142,143 or MCI. 101,134 Prevalence rates varied from 6% to 39%. A visual representation of the prevalence of diabetes in PLWD is provided in Figure 3. The two largest studies, both of which involved participants from national primary care data sets in the UK, one from Scotland91 and one from the UK (primarily England),127 reported similar prevalence rates of 13%91 and 14%. 127 A Spanish study14 reported a prevalence rate of 20% in men (95% CI 18% to 22.5%) and 16% in women (95% CI 14% to 17%). Although diabetes was one of the most frequent comorbidities in the study, the authors did not demonstrate a significant association between dementia and diabetes. Five studies compared rates of diabetes in those with and those without dementia. Three studies with samples recruited from primary care databases, two from the USA2,121 and one from the UK,127 found similar rates of diabetes between groups and a study in hospital inpatients in Switzerland143 found no significant difference in the rate of diabetes between those with and those without dementia. In contrast, a study of hospital inpatients in the UK12 found significantly fewer people with dementia diagnosed with type 2 diabetes than control subjects without dementia.

FIGURE 3.

Prevalence of diabetes in PLWD.

Stroke

Ten studies2,12,14,91,118,119,121,127,142,143 reported the prevalence of stroke in people with dementia and two studies101,134 reported the prevalence of stroke in people with cognitive impairment. Prevalence rates varied from 3% in hospitalised older people in the UK12 to 34% in a sample of urban and rural community-dwelling people with cognitive impairment in the USA (Figure 4). 101 Two studies used records from large primary care databases in the UK, with one reporting that the rate of stroke in PLWD was 19%91 and the other reporting that the rate of cerebrovascular disease (including stroke) was 29%. 127 A study using a primary care data set in Spain found a prevalence of cardiovascular disease of 7% in men and 5% in women. 14 Five studies compared the rate of stroke in people with and without dementia. Three2,12,143 found no significant difference in the prevalence of stroke but one study of hospital inpatients119 found that stroke was more common in people with dementia and a primary care-based study in the UK127 found a greater prevalence of cerebrovascular disease in people with dementia.

FIGURE 4.

Prevalence of stroke in PLWD.

Vision impairment

Eight studies reported the prevalence of some form of VI in people with dementia, including all eye diseases,91,121,137,142 glaucoma12,14,118 and cataracts. 14,118,144 Differences in the populations studied and the way that cases were identified make comparisons across studies difficult. Two studies compared rates of glaucoma in people with dementia and those without dementia; prevalence in people with dementia was lower in a population sample in Finland118 but no different in hospital inpatients in a retrospective case–control study in the UK. 12 Two studies compared rates of cataracts. A large primary care cohort study in the UK found a lower incidence rate for cataracts in people with Alzheimer’s disease than in control subjects144 but a smaller population-based study in Finland reported no difference in the rates of cataracts. 118 A cross-sectional study in Spain found that the prevalence of cataracts was 7% and that of glaucoma was 4%. 14

Dementia and comorbidity compared with dementia

Approximately one-third of individuals with dementia and no target condition used hospital services in the last 12 months. In comparison, between 45% and 58% of individuals with dementia and one of the target health conditions used hospital services, with the highest use seen in those with dementia and stroke (see Figure 6). This was mainly driven by the use of inpatient services, as day patient and outpatient service use was largely the same in both groups (see Figure 7). Those with dementia and stroke used inpatient services more than those with only dementia; this was also the case for those with dementia and either diabetes or VI, but the level of service use was not quite as high as it was for those with dementia and stroke (see Appendix 5).

As with hospital use, the use of services in the previous 4 weeks was higher for those with dementia and one of the target health conditions than for those with dementia alone (see Figure 6). For those with dementia but none of the target health conditions, six out of 10 people used some form of service in the last 4 weeks, whereas, for those with dementia and one of the target health conditions, around eight out of 10 people used some form of service in the last 4 weeks. Use of services was higher for those with dementia and stroke because of home care assistant, chiropodist and day centre use (see Appendix 5). The use of any nursing service and chiropodists was the reason for higher service use in the previous 4 weeks for those with dementia and diabetes and this was also the case for those with dementia and VI (see Appendix 5).

Around one-quarter of people with dementia and none of the target conditions used day-to-day services. This compared with more than one-third of those with dementia and diabetes and almost half of those with either dementia and stroke or dementia and VI (see Figure 6). Those with dementia and stroke had day-to-day help from a care worker a considerable amount more than those with dementia alone. Although this was also true for those with dementia and either diabetes or VI, it was not of the same magnitude (see Appendix 5).

Unpaid care was common, with over two-thirds of people with dementia alone reporting use of informal help from family and friends. Use of unpaid care was even higher for individuals with dementia and one of the target health conditions, with around eight out of 10 people reporting informal help (see Figure 7).

Dementia and comorbidity compared with comorbidity alone

When comparing those with dementia and a target health condition with those with just the health condition, hospital use mostly does not change (see Appendix 5). The only case in which there is a difference is for those with dementia and stroke, with use of inpatient services being higher than for those with stroke alone. The use of a home care assistant and a day centre in the previous 4 weeks was higher for those with dementia and the target health condition than for those with the target health condition alone. Of all of the day-to-day services, the use of a care worker was higher for those with dementia and a target health condition than for those with the target health condition alone. Unpaid care was also used more by those with dementia and any of the target health conditions than by those with the health condition alone. However, caution should be exercised when interpreting these results as the estimates have broad CIs because of instability introduced by having a small reference group (the target health condition).

Overall service use

Box 3 shows the key messages relating to overall service use.

Figure 8 gives the overall grouped service use for individuals with dementia and one of the target health conditions. Additional details of differences in service use between CFAS I and CFAS II comparing dementia alone with dementia plus a target condition are provided in Appendix 5. One of the limitations was that hospital use data were collected for a different time period from that for day patient or outpatient service use data. For example, for day patient and outpatient services participants were asked if they had used them in the previous few months but for inpatient services participants were asked if they had been admitted in the last year. However, it is clear that hospital use increased between CFAS I and CFAS II for those with dementia alone and for those with dementia and stroke.

FIGURE 8.

Percentage of grouped service use in CFAS I and CFAS II with 95% CIs by those with dementia alone and dementia with each of the target comorbidities. (a) Dementia and no target comorbidity; (b) dementia and stroke; (c) dementia and diabetes; and (d) dementia and VI.

Although hospital service use increased for those with only dementia, the use of day-to-day services and service use in the 4 weeks before interview decreased slightly between CFAS I and CFAS II. Day-to-day service use decreased between CFAS I and CFAS II for all those with dementia and a target condition. Apart from day-to-day service use, those with dementia and stroke had similar service use in CFAS I and CFAS II. This was also the case for those with dementia and diabetes, although there was a slight increase in the use of unpaid care in CFAS II. More change was seen for those with dementia and VI: there was an increase in the use of unpaid care and services in the 4 weeks before interview between CFAS I and CFAS II as well as the decrease in day-to-day service use. Unfortunately, because of non-response this could not be tested formally.

Across all target conditions in CFAS I and CFAS II there was an increased use of unpaid care compared with those having dementia alone.

Separate service use

Box 4 shows the key messages relating to separate service use.

More detailed results on separate services are provided in Figure 9. For those with dementia but none of the target health conditions the overall increase in hospital use resulted from an increase in the use of all hospital services but mainly from an increase in day patient and outpatient admissions. The large increase in day patient service use was also present for those with dementia and stroke. Although hospital service use overall increased for people with dementia and stroke, reductions in inpatient and outpatient admissions were observed between CFAS I and II. These decreases were also observed in those with dementia and VI but not in those with dementia and diabetes.

FIGURE 9.

Percentage of individual service use in CFAS I and CFAS II with 95% CIs by those with dementia alone and dementia with each of the target comorbidities. (a) Dementia and no target comorbidity; (b) dementia and stroke; (c) dementia and diabetes; and (d) dementia and VI.

For people with dementia and without any of the target conditions, decreases in service use in the 4 weeks before interview were mainly driven by decreases in chiropodist and social worker use. Increases in day centre use were mirrored in people with dementia and either stroke or VI and there was also an increase in the use of nursing services by those with dementia and stroke. For people with dementia and VI, the overall increase in service use in the 4 weeks before interview was mainly driven by an increase in chiropodist use and GP visits, as well as greater use of day centres. A reduction in the use of meals on wheels was observed across all groups.

Differences in the proportion of people using care workers, paid help or home help on a day-to-day basis accounted for the majority of the change in overall use of day-to-day services across groups. For people with dementia and no target condition, reductions in the use of daily care workers and home help accounted for the majority of the reduction in day-to-day services. Decreases in the use of meals on wheels and care workers accounted for the overall decrease in use of day-to-day services seen for people with dementia and either stroke or VI.

Separate services within each condition

Although overall hospital service use remained similar in CFAS I and CFAS II for those with dementia and stroke, there was a decrease in inpatient and outpatient admissions, which was balanced out by an increase in day patient admissions. Between CFAS I and CFAS II those with dementia and stroke used more speech therapists, occupational therapists and social workers, whereas use was low in CFAS I. For this group, there was also an increase in the use of day hospitals and day centres, GPs, chiropodists and nursing services. There was a decrease in the use of physiotherapists, meals on wheels and home help by those with dementia and stroke during this time. The use of day-to-day services decreased for those with dementia and stroke. This was mainly because of a reduction in the use of care workers, home help, paid help and meals on wheels. The use of unpaid care remained similar between CFAS I and CFAS II.

For those with dementia and diabetes there was only a slight increase in the use of outpatient services between CFAS I and CFAS II. Overall, the use of services in the 4 weeks before interview was similar between CFAS I and CFAS II but there were increases in the use of speech therapists, social workers and chiropodists, which were mainly offset by the decrease in the use of meals on wheels. The decrease in day-to-day service use seen in those with dementia and diabetes was the result of a decrease in the use of care workers, wardens and paid help, although increases were seen in the use of community nurses and home help. The use of unpaid care increased substantially between CFAS I and CFAS II for those with dementia and diabetes.

All service use apart from day-to-day service use increased between CFAS I and CFAS II for individuals with dementia and VI. For hospital service use this resulted from an increase in day patient admissions although decreases were also seen in inpatient and outpatient admissions. There was a decrease in the use of physiotherapists, meals on wheels and home help in the 4 weeks before the interview between CFAS I and CFAS II but large increases in visits to chiropodists, GPs and day centres. For day-to-day service use, all service use decreased between CFAS I and CFAS II apart from use of wardens and community nurses. The use of unpaid care increased between CFAS I and CFAS II.

People living with dementia and their family carers value relationship continuity

A common thread in the interviews with PLWD and their carers was that they valued a continuous relationship with HCPs and health-care teams who knew their medical history and were aware of their health-care needs. Successful interactions with HCPs were usually associated with positive personality characteristics such as friendliness, warmth and being treated with consideration and respect. Good communication skills, taking time to explain things and including PLWD and their carers in decisions were valued. There were examples in which a rapport was developed with a HCP because he or she had taken the time to get to know the patient:

and he struck up a really warm relationship with this doctor and now he really likes going there and I expect they have the same conversation every time he goes.

Carer VI 3, south-east

Likewise, less successful interactions were often attributed to HCPs’ negative personality characteristics and poor communication skills. Examples given were that the HCP was stern, abrupt and rude and spoke with no eye contact or in a patronising manner:

he was quite rude to us and we weren’t happy, he sort of didn’t look up, he was looking down.

Carer diabetes/VI 4, south-east

For many of our participants their comorbid health condition predated the diagnosis of dementia. Despite this, participants gave very few examples of when a diagnosis of dementia was discussed in relation to its implications for and impact on their overall health and the management of any existing conditions. Moreover, patients sometimes felt that the diagnosis of dementia had been delivered in an insensitive way. This carer talks of being ‘catapulted into despair’:

. . . in fact a nurse, I think looking back she was very out of order to say this, I think she said ‘I think it’s small vessel disease’, and I said ‘how do you treat that?’, and she said ‘there’s no treatment’ . . . I mean this nurse really catapulted me into despair.

Carer stroke 7, south-east

Continuity with social carers was also very important for PLWD and their family carers. Previously well-documented problems associated with paid carers’ erratic schedules and multiple people visiting the same person posed particular challenges for PLWD. It threatened their ability to manage their medication (especially a problem for people with diabetes) and stay in their own home. One carer gave an example of how she had negotiated with an agency to limit the number of carers visiting to a maximum of three, a number that accommodated times of staff leave and sickness:

I said to them, ‘We cannot have different carers coming in, we cannot have different,’ so they’ve said they’ll keep it to three which is fair enough because you have sickness.

Carer diabetes 7, south-east

Relationship continuity facilitates access to care

Relationship continuity with both the clinician and the practice management or support staff meant that additional administrative practices could be applied to address the potential for missed appointments because of memory loss. When HCPs knew patients and were aware that they had dementia, they were more likely to remind them of upcoming appointments, give longer appointments and make allowances when they missed appointments. However, we found no examples of when a dementia diagnosis would automatically trigger the kind of practice described by this GP:

In fact when I know that I’ve got one of my patients with dementia booked in I will ask, I will send an email in advance to the administrator, to the receptionist to sort of call them on the day to remind them.

GP 2, London

In addition, relationship continuity could facilitate assessment and treatment, for example making it easier for VI specialists to conduct and interpret tests, although, as the following quote demonstrates, such approaches were reliant on individual clinician’s knowledge of the patient. How this knowledge of the person could be shared more widely was less clear.

I get some dementia patients come to the AMD clinic and usually with a carer of some description, and then we have the difficulty of assessing their vision because of them not being able to verbalise what they’re seeing but usually those patients I’ve got to know and I can tell if they’re making a reasonable assessment or whether they’ve just switched off and on the whole I can tell, you know, that they’re understanding and I can understand what they’re seeing.

Staff nurse, VI focus group, East of England

Many PLWD and their carers reported positive continuous relationships with their GP and recognised the role that GPs played in overseeing and co-ordinating their care and facilitating access to care. There were multiple examples of GPs helping to organise social care for PLWD, following up with memory clinics, contacting pharmacies for prescriptions, chasing referrals, contacting transport providers and providing PLWD with signposting and information. This would suggest that clinicians in regular contact with PLWD were aware of the compensatory and anticipatory care that these patients needed when visiting other services. However, this was discretionary, required individuals to be engaged and proactive and did not necessarily translate into systems of care.

Triangles of care

In many cases interactions involved a triad of the PLWD, the family carer and the HCP. HCPs in our study were aware of the role of family carers in co-ordinating and managing their relative’s health care. In the focus group with VI specialists participants said that they actively encouraged family carers to accompany the PLWD to the eye clinic as they could provide important information and help the PLWD feel at ease during eye tests:

Well really important, really important, and I think they need to be involved in sort of every step of the way.

Ophthalmologist, VI focus group, East of England (speaking about involving family carers)

Stroke consultants reported that they involved family carers in decisions about whether to thrombolyse a PLWD. HCPs’ awareness of the importance of involving family carers was reflected in some of the accounts given by family carers:

when I rang to make the appointment I said to them, ‘My dad’s got Alzheimer’s disease but he won’t acknowledge that, but he does need extra time and I’d like to come with him because he may need my support, emotional support but he may also need me to help interpret some of the questions that he’s being asked’, and they were great, they gave him a double appointment, so he’d got twice as long as he would normally have, and they were quite happy for me to go.

Carer VI 3, south-east

However, the interviews with PLWD and their carers provided a number of examples in which carers felt undervalued or excluded from decision-making about their relative’s care. For example, there were several accounts in which carers felt ignored by HCPs when they struggled to get treatment for their relative:

And in fact I can remember it took at least two, if not three phone calls to the practice nurse, because at first you came off the phone . . . That’s right, because we’d been telling them there’s a problem, put it in writing, we thought we’d got the message across didn’t we?

Carer diabetes 4, south-east

I did get a bit annoyed two years ago because all they do is we bring him in, they check the pressures at the back of his eye and then they say to him, ‘Can you read that card?’, they put a few drops in, we see someone and we come home, and that’s been happening for five years. Now this year I asked for a second opinion and he’s never seen the glaucoma people.

Carer diabetes/VI 4, south-east

In one account, a district nurse gave a patient with dementia and diabetes a new blood testing kit without giving the family carers information about how to use it:

Do you remember that mum, you know your method for testing your blood that you’d used for years, last Easter the nurse came on Maundy Thursday, the day before Easter and she gave you a new machine to do it . . . And you could not fathom it at all . . . No, no, none of us could, could we? It was chaos.

Carer diabetes 4, south-east

Sometimes PLWD would also feel excluded and ignored when HCPs communicated only with their family carer:

Yeah, but I mean really when I sit in on that with Dr [consultant], really I could almost be invisible at some times because he doesn’t concentrate on me at all, he’s always concentrating on you.

PLWD diabetes/VI 6, north-east

An example of good relationship continuity with a GP and how this can facilitate access to services can be seen in the vignette in Box 5. This describes a particular case from the data and illustrates the complex health needs of some people with dementia.

Strategies for self-management of comorbidities

Some PLWD were still able to self-manage their care, including booking their own appointments, attending appointments alone and remembering to take medication. PLWD developed a variety of strategies to facilitate self-management of conditions such as diabetes and glaucoma. This included taking tablets or administering eye drops at the same time each day or putting medication in a particular place once it had been taken. One man with dementia and glaucoma described how he kept his eye drops in one place on a chest of drawers and, once he had administered them, he would move the bottle to the other side of the drawers. This would indicate to him that he had used the eye drops even though he might not remember doing so:

His plan is that he has them on this side in the morning, and he puts them over there, and then in the evening he puts them back on that side.

Carer VI 1, south-east

Transitions from self-management to dependency

As their dementia got worse, the ability of PLWD to self-manage their condition declined and management moved from the PLWD to the carer. This transition was often a gradual process, with carers initially noticing small changes in their relative’s ability to manage that could be dealt with by adopting strategies to facilitate self-management, for example using memory aids, diaries and dosette boxes. However, over time, these strategies ceased to be effective:

gradually I took over the medication, each step was really painful, you know ‘cos he always used, he was on by the time when he started sort of losing grip on things he was on a lot of medication, six or eight different pills a day and he would line them up and take them one at a time and so on, and then I started putting them in dosette boxes and then he started not remembering to take them and then he would take them at random so gradually I took over the whole thing and I mean there were a lot of tears and agony.

Carer stroke 7, south-east

we had a timer at the beginning and it bleeped when he should take a tablet, well he would go and turn the bleeper off and forget to take the tablet  . . .

Carer VI 6, south-east

In some instances people with diabetes had successfully managed their condition for many years but had began to forget to take their medication or to lose the ability to control their diet. Carers of people with dementia and diabetes reported how it became difficult to regulate blood sugar levels because their relative often forgot to eat and drink, ate too much or ate the wrong kind of foods. There were safety concerns for people in this period of transition, with accounts of people forgetting to take medication or taking too many tablets or too much insulin:

Another risk that was highlighted to me recently was a patient in this circumstance who was previously self-managing, district nurses had to take over, but the insulin has to stay in-house and the nurses don’t carry it around, so this patient was, it transpired this patient was given her own insulin and the district nurses were coming in after and administering again, it took a while to establish that.

Diabetes consultant, diabetes focus group, south-east

An example of the transition from self-management to dependency for a woman with diabetes and dementia is provided in Figure 12. As a result of her dementia, this patient gradually became unable to manage her diabetes. This resulted in a hypoglycaemic attack and hospitalisation, after which she deteriorated and could no longer live alone.

FIGURE 12.

Transition from self-management to dependency.

Impact of managing dementia and comorbidity on family carers

Many family carers, in particular spouses, had their own health problems, which made it difficult for them to help manage their relative’s conditions. Other carers, such as adult children, sometimes lived a distance away or had work and family commitments which meant that they found it difficult to take on responsibility for day-to-day care. Although many family carers have to care at a distance this is particularly problematic for carers of PLWD as it is difficult for them to offer support or to monitor adherence to medication over the telephone:

I know yesterday you had a bit of a problem because you thought, when I phoned you up in mid-morning you thought that the lady hadn’t been to give you your medications and your Cornflakes but in fact she had, hadn’t she?

She had, yeah.

So mum ended up having two breakfasts yesterday.

Carer and PLWD diabetes 4, south-east

For carers of people with dementia and diabetes, coping with the administration of insulin or testing blood sugar could be particularly challenging, because they felt that they lacked the necessary skills, because their relative became distressed or because they did not feel comfortable with the task:

And I’m waiting for someone to realise [laughs] ‘cos we’re not diabetic nurses.

Carer diabetes 7, south-east

‘now mam, you’ve got to do this’, I said ‘look I’m not a nurse’.

Carer diabetes 8, north-east

He doesn’t want it, he tries to refuse it and it is all horrible because it’s needles all the time and it hurts, you know, he doesn’t like it and I have to take bloods, and I say, ‘I’m sorry dad, you have to have it, your health will be worse, you’ll deteriorate even quicker’, he doesn’t care, he doesn’t want to be on anything.

Carer diabetes/VI 4, south-east

the minute you start asking them [referring to family carers] to do something technical or in their eyes complicated, such as pricking their finger, doing a blood sugar test or giving insulin, they kind of go, ‘No, I can’t do that’, and they’d be capable of doing it because we can teach them and support them and so on but there’s a barrier that they can’t get beyond where, no that’s beyond what I’m prepared to do, happy to do, comfortable to do.

Diabetes consultant, diabetes focus group, south-east

It was clear that there were emotional as well as practical and physical challenges for family carers as their role changed from spouse or child to carer:

Oh it was, she was like [laughs], . . ., you know, tantrums, you know, ‘I’m not doing that’, you know, flat refused [laughs] . . . Oh yeah, honestly, it’s quite funny, I mean sometimes you sort of think it definitely has been a role reversal, you know, you become the parent.

Carer stroke 4, south-east

Family carers co-ordinate care and navigate health-care systems

Family carers clearly play a significant role in co-ordinating their relative’s care and navigating health-care systems, for example managing multiple appointments, organising transport and keeping records of appointments, test results and medication:

And now I go with him for all his appointments . . . I have got a notebook there which I use to note everything, you know, when it started [sound of paper rustling] for myself, for my own, you know . . . I used to record everything, ‘seen by so and so, what prescribe and when to be seen again’ and all these things.

Carer diabetes/VI 2, south-east

Carers reported that they often had to chase up results or referrals and ‘battle’ to get appointments or access to treatments and tests. The following quote illustrates the frustration of a carer whose father’s electrocardiogram results had not been sent to the memory clinic:

I have to chase everything up in the surgery . . . the week before last for them to actually get the ECG [electrocardiogram] results because I had to go and pick them up and physically take them there myself.

Carer stroke 2, south-east

Although such experiences are not unique to the carers of PLWD, they may be more acute for them as evidence suggests that PLWD are a particularly vulnerable group who may have poorer access to services than people without dementia. They are also a group who generally lack the ability to co-ordinate their own care and are reliant on family carers to negotiate systems on their behalf. Moreover, HCPs’ concerns about confidentiality meant that carers sometimes had trouble accessing the information that they needed to manage their relative’s care, for example being unable to collect prescriptions or being refused copies of letters or details of hospital appointments. Some carers had proactively managed to add their contact details to health files so that they would receive copies of any letters sent to the PLWD, but this was not carried out routinely. Although a number of carers and PLWD mentioned lasting power of attorney, this was seen as facilitating management of financial affairs rather than health care.

Support for people living with dementia and family carers

Many HCPs recognised the importance of supporting family carers. One local initiative cited by a HCP was a carer-friendly hospital programme piloted on the stroke unit. This included a carer’s agreement that was completed on admission by the family carer in conjunction with a member of ward staff:

one of the things that ran very successfully in [name] Hospital this year was a carers, the Carer Friendly Hospital, and they piloted it on the stroke unit and I think that’s also about making sure that the carers of people who have dementia as well as stroke or who have multiple other comorbidities have the support.

HCP stroke CCG 1, south-east

However, often support for carers was limited and there appeared to be little in the way of formal support for carers managing their relative’s diabetes. For example, the daughters of a PLWD with diabetes felt that a telephone call with a diabetic nurse every 2 weeks was not adequate support:

I think ‘cos remember we’re just carers, and I think we have someone professional that comes in to do, especially the insulin at night to actually check to say, ‘Well yeah this is okay’, you know, I don’t think we get anything like that.

Carer diabetes 7, south-east

Informal social networks, such as extended family, friends and church groups, were clearly important to PLWD and their carers. In addition, voluntary organisations such as the Stroke Association, the Alzheimer’s Society and Parkinson’s UK provided social and practical support to people with dementia and comorbidity. Voluntary groups were able to provide condition-specific information, peer support and guidance about the support available.

One physiotherapist noticed that the Stroke Association was having more impact in supporting patients and carers.:

and certainly some of the stroke patients I’ve been seeing more recently, whatever age, young or elderly, with issues, have had contact from a Stroke Association visitor or phone call, and, oh and some of them are using them more and I think that’s very helpful to the spouses and carers ‘cos it, as a form of support.

Physiotherapist 1, south-east

the Alzheimer’s Society have been fantastic . . . Oh the Alzheimer’s Society, . . . that’s a godsend that is, absolutely godsend, yeah.

Carer stroke 4, south-east

Local groups could be a good source of peer support. For example, one PLWD who had been suffering with depression since having a stroke said that he appreciated the peer support he received from attending his local Stroke Association group.

Integration of services

The participants with dementia generally had complex health needs and were often seen by a number of different services and specialties. Carers and PLWD felt that specialists tended to focus on their own area and did not share information with other specialities. As the following quote shows, they did not necessarily see this as a problem but recognised the value of having one professional (in this case the GP) who could look at the ‘whole picture’:

memory loss, no, they’re not interested in that, they’re interested in treating the symptoms of diabetes not somebody else’s, it’s almost like somebody else’s problem but I don’t mean that hard-heartedly, I mean that we are dealing with this bit, there’s nobody, other than my GP looking at the whole picture.

PLWD diabetes/stroke/VI 1, south-east

Health-care professionals from the specialties studied admitted that they had a limited understanding of the needs of PLWD. For example, diabetes specialist nurses said that they were unsure about when to refer someone with cognitive problems:

when you identify somebody who’s having a problem with their memory and you’re following them up, . . . at what point should they be referred to this sort of agency, you know, what parameters do you use to measure it, you know, all of those things that I can’t say really what that is and I don’t know if I could say if any of my colleagues do either.

Diabetes specialist nurse, diabetes focus group, London

Several HCPs recognised that the organisation of services around single diseases was a problem for PLWD with complex health needs. The current infrastructure did not support the exchange of information and in particular participants said that poor integration of mental and physical health services, with different information technology systems, made it impossible to share medical records:

And I think that’s a key point I was going to make is one of the big stumbling blocks we have is the fact that services or parts of different trusts so the Mental Health Services sit within the [name] Partnership Trust so they don’t use the same system as us so we can’t share notes, the GPs use a different system again so it makes it very difficult to communicate to even find out what services people are under, you know, if that could be improved, if we could all be on the same system that would be good [laughs].

Physiotherapist, stroke focus group, south-east

There were some examples of successful integrated working, such as community matrons, or a community multidisciplinary team involving a geriatrician, an old-age psychiatrist, elderly care nurse specialists, GPs and a social worker who had regular face-to-face meetings. The presence of a key person or lead clinician to co-ordinate care was consistently identified by different participants as compensating for the known problems and challenges of services defined by single diseases and PLWD’s multiple encounters with different professionals:

I think new services like in L1 [London Borough] we have the community matrons have actually been of great help because they are more of care co-ordinators which I think do help these people with comorbidities in the community.

GP 2, London

Personalisation of care

Health-care professionals spoke about the importance of personalising care for PLWD. For example, diabetes specialists said that they would personalise targets for blood sugar control for PLWD:

And some of the nursing staff have been working with their community colleagues quite intensively to develop individualised regimes to try and, you know, if they eat half their meal to give this amount of insulin, if they eat all of the meal to give a different amount of insulin, so it’s almost like a sliding scale, it’s individualised, it’s not for every patient but for those who sometimes refuse food it’s sometimes really quite a helpful way to prevent them having to keep coming back in with hypos or highs.

Diabetes consultant, diabetes focus group, south-east

Vision impairment HCPs also said that they would simplify medication regimes for PLWD by reducing the number of times that they would need to administer eye drops. Stroke specialists said that stroke rehabilitation regimes needed to be personalised for PLWD and take into account the kinds of activities that they like to do:

And you might need to take more of a sort of automaticity approach so just, you know, find out what the patient likes to do, whether they like dancing or just, you know, try and go on the automatic things that aren’t too cognitively challenging to try and engage them as much as possible.

Physiotherapist, stroke focus group, south-east

Although HCPs acknowledged the importance of personalised care, it was not clear to what extent this was happening in practice. As this GP observed, there was a common understanding of the importance of having a person-centred approach but they were unsure what the practical application of these ideas looked like:

you get the vocabulary established but then people latch onto the vocabulary and not the meaning, ‘the holistic care’, you know brilliant one, but then what do people mean by it?

GP clinical commissioning group 1, Midlands

There were clear examples in which there was a failure to know the person’s story and tailor care accordingly, for example not adjusting stroke rehabilitation for a PLWD who had been a keen walker but who struggled with the rehabilitation exercises he was given:

we went three or four times and they said you know, ‘these exercises will help you’, well exercises are not part of what D does and they didn’t really help him, you know, . . . and I mean he just found it ridiculous to be doing these things.

Carer stroke 7, south-east

Transfer of information between specialities

People living with dementia, family carers and HCPs all gave examples of poor information transfer between systems and specialities. Of particular concern was that HCPs specialising in diabetes, stroke and VI were often unaware that someone had a diagnosis of dementia:

But obviously anywhere new that we go, like for this colonoscopy and all that sort of thing, I always mention, you know, ‘he has dementia quite, quite severe dementia’, I think when we went for a blood test for this colonoscopy it wasn’t on his notes there, although it was on the original colonoscopy referral sort of thing. So it seems that within the hospital set-up they don’t always transfer all relevant information between departments.

Carer diabetes 1, south-east

Diabetes specialists sometimes became aware that someone had dementia only when they realised that they were having problems self-managing their condition or taking on new information. VI specialists reported that they were frequently not made aware that a patient had dementia before they saw him or her in clinic, which made assessments and treatment more difficult.

Family carers were facilitating informational continuity by collating records and actively transferring information between HCPs and different services. Carers and PLWD were frustrated that they often had to repeat the same information to different HCPs:

You see one person one time and then you’d have, tell them what they need to know and then you see the next person and they don’t know, do they. You have to go all through it.

Yeah, you have to start again. But I mean, that actually is a problem with the NHS all the way through, I mean, because it’s a kind of, you know, you’re not always treated as a whole person, you’re treated as individual bits, aren’t you.

PLWD and Carer VI 7, south-east

Carers also reported problems with record-keeping, which may be particularly problematic for PLWD who are likely to be unable to provide an accurate medical history to clinicians:

but then what happened was it was, we came back here and he didn’t have no notes or recollection of my dad seeing that doctor in October.

Carer diabetes/VI 4, south-east

Health-care professionals from all specialities suggested that PLWD could have a hand-held record to take to appointments, similar to the ones carried by people with learning difficulties. It was clear, however, that the interviews were the triggers for these suggestions and that patient-held records had not been developed for PLWD or their carers, as this quote demonstrates:

I guess maybe the purple folder I’ve just mentioned, I’ve not thought of it before but it’s potentially something that can be passed, you know, from one professional to another even if you just write a few words, entry, at least then people know who else is involved with the care and especially if their usual carer isn’t about for whatever reason, you know easily who to contact.

GP 5, south-east

However, although hand-held personalised documents such as the ‘This is me’ passports exist as a way of ensuring that PLWD can share key information about themselves with HCPs [see http://alzheimers.org.uk/thisisme (accessed 7 January 2016)], we found that very few PLWD, carers or HCPs were aware of them. One carer thought that she had been given a ‘This is me’ passport but said that it wasn’t filled in and she didn’t use it. One patient mentioned having had a small card that detailed that he had Alzheimer’s disease and his next of kin, medication and doctor’s details, but he had misplaced it.

Availability of resources/information

There were clearly issues about the timely delivery and availability of information for people with dementia and another health condition. HCPs acknowledged that there is often a lack of support, information and training for people with dementia and diabetes and their carers. One HCP said that diabetes educational programmes vary across different regions and not all programmes are open to carers or PLWD who cannot self-manage:

But structured education varies in its availability anyway and the programmes vary and access to the programmes in different areas will vary, so whether they’re happy to accept carers or whether it’s only open to a person with diabetes and it’s therefore not open to somebody who has diabetes and dementia or who can’t actually self-care.

Diabetes nurse 1, south-east

There was a suggestion from some HCPs that PLWD would not be considered suitable for some of the educational programmes that were offered for stroke:

We also run a huge sub-management programme which does have a module for people who have had strokes as well as two general modules and somebody with dementia we wouldn’t invite necessarily to those modules so they themselves would miss out on a huge bit of secondary intervention and advice that they might get otherwise and because we don’t invite the carers automatically the carer also doesn’t get the secondary intervention advice.

Physiotherapist, stroke focus group, south-east

Some of the problems with relationship, management and informational continuity that have been detailed in the previous sections can be seen in the vignette in Box 6, which describes a specific case from an interview with a PLWD and her daughter. In particular, it highlights the transition from self-management to dependency and the problems that this cause for the family carer, who lives at some distance and feels excluded from decision-making about her mother’s condition.

Appropriateness of guidelines and pathways

The data from the interviews and focus groups suggest that current guidelines and care pathways for diabetes, stroke and VI are often not appropriate for people with dementia and comorbidity:

You know, we have clinical pathways for the various specialties, and conditions, but not particularly aimed at patients with memory loss. I guess one could have sort of a subset of, yeah, within various guidelines, but I don’t think we have any in that at the moment in ophthalmology.

Ophthalmic surgeon, VI focus group, East of England

I think in terms of thinking about stroke pathways, in terms of dementia I think that one of the things is, one of my criticisms if you like of the stroke pathway is it’s very much related to the stroke and in relation to looking at comorbidities, not just dementia but a lot of the comorbidities, sometimes perhaps it’s not as robust as it could be.

Stroke clinical commissioning group 1, south-east

Health-care professionals also said that dementia pathways do not take into account those patients with comorbidities such as diabetes or VI:

I think that’s my next step is to try to raise a bit more of an awareness of vision within the dementia pathway.

Ophthalmologist 1, London

Some of the problems associated with current stroke pathways are illustrated in Figure 13. Many stroke pathways are geared to early discharge. Although reducing the amount of time that a PLWD spends in hospital may be a good thing, they may need more support at home than is generally available. They also need access to appropriate specialist rehabilitation.

FIGURE 13.

Potential problems with current stroke pathways for PLWD. ED, early discharge.

Systems not appropriate (not dementia friendly)

Health-care systems are often not dementia friendly. One frequently occurring example was around appointments, particularly in secondary care. PLWD and their family carers reported problems with remembering appointments (especially if they were booked over the telephone), difficulties with co-ordinating multiple appointments and problems with rescheduling and cancellations:

there was one clinic that he went to who wanted to make all the appointments by phone, so they would ring my parents . . . and say, ‘Right, we’d like you to come in next Tuesday at ten o’clock’, and dad would say, ‘Yeah, right okay’, and then he’d put the phone down and my mother would say, ‘Who was that?’ and he’d say, ‘I don’t know’, ‘What did they want?’, ‘Don’t know’.

Carer VI 3, south-east

Missed appointments could result in PLWD being taken off the clinic list and having to be re-referred by their GP. HCPs reported that pressures to meet targets could lead to a zero tolerance approach to patients who failed to turn up for appointments.

Health-care professionals were aware that people with dementia often needed longer appointments but time pressures meant that this generally did not happen:

one of the things about eye clinics is you have to be aware that the normal process which is fairly intensive of getting people through the system and it takes an hour or so to get through, if someone’s got dementia or learning disabilities you have to take that into account and how you handle them in the environment of the clinic, you know, they need more time.

Ophthalmologist 1, London

but actually it really requires time of talking to the patient I think to uncover those sort of issues to do with memory problems and we’re not always very good at that I think.

Ophthalmologist 2, East of England

There was a lack of flexibility in health and social care that made it difficult for people with dementia and comorbidities. For example, HCPs reported that in some instances insulin regimens had to be altered to fit with the schedules of district nurses who could only visit at certain times of the day:

but if you’re reliant on district nurses for example who got their own, you know, they‘ve got their timetable of what they need to do in their work to get through, and they have to administer it at a set time and that can be incredibly disruptive to the individual.

Diabetes consultant, diabetes focus group, south-east

The split between social care and health care was also identified as a particular problem. Supporting PLWD to live independently at home is invariably seen as social care. This broke down when social services carers were not able to test blood sugar or oversee medication for people with diabetes, making it difficult to co-ordinate meals and medication and putting PLWD at risk of hypoglycaemia:

Yeah. Silly things like a simple blood glucose test or being taught how to recognise signs and symptoms of a hypo could prevent a whole admission or, yeah.

Diabetes consultant, diabetes focus group, south-east

A more cohesive provision of social and health services to patients in the community was seen to be particularly important by HCPs for PLWD and diabetes:

then just to simply tie up the medication and monitoring of diabetes with the provision of meals is basically all that needs to be done. And I think that’s where it falls apart a lot of the time because people who can’t self-manage will often be reliant on a district nurse or a community nurse to perhaps come in and oversee the medication or give them their insulin, but they won’t be responsible for ensuring that that person has their breakfast or, so you get big gaps between one and the other and that really is not helpful. And that’s how people do end up having falls and being admitted to hospital, yeah.

Diabetes consultant, diabetes focus group, south-east

Some of the problems with systems that are detailed above can be seen in the vignette in Box 7, which describes a specific case from an interview with a PLWD and his daughter. It also highlights how some HCPs do not have the skills and knowledge to deal sensitively with PLWD.

Environments not appropriate (not dementia friendly)

People living with dementia and their family carers reported a number of negative inpatient experiences including multiple bed moves, long waiting times for procedures, staff not being aware of the patient’s dementia and staff not understanding the needs of PLWD. This often led to negative outcomes for the PLWD such as wandering and increased agitation, confusion and distress. There were also examples of a lack of understanding of the specific needs of people with dementia and particular comorbidities such as diabetes:

She had to leave here five in the morning, nil by mouth, she was told to get to H for eight and she didn’t go down for her surgery until after three.

She was distressed because she . . .

By the time . . .

. . . was so hungry and she, you know, with people with diabetes and they’re hungry they get pain don’t they in their head and things.

Carers diabetes 7, south-east

Health-care professionals also had concerns that hospital environments may not be safe or suitable for PLWD and that hospitalisation could lead to a deterioration in their condition. There appeared to be an expectation among some HCPs that PLWD will exhibit challenging behaviour while in hospital and that this will impact on the care of other patients. Some HCPs provided examples of dementia specialist wards or units where the focus was on person-centred care and where the environment was geared towards PLWD:

Actually on [name] ward it’s fine, there’s space and no one complains about them walking around the ward, it’s actually quite fine simply walking around the ward. So I think that’s hugely important that actually people aren’t being penalised for trying to be mobile or hey, people are actively encouraged almost.

Psychiatrist 1, south-east

However, environments that specialised in care for our three comorbid conditions tended to be less dementia friendly. For example, in eye clinics patients often have to complete multiple tests over long periods and may need to attend appointments on a number of different days. There is also an emphasis on moving many patients through the clinic as quickly as possible. VI HCPs felt that PLWD would benefit from longer appointments but the current structure of their service made this difficult to implement.

Some of the potential barriers and facilitators for people with dementia and VI can be seen in Figure 14. The barriers are common themes that arose in the literature and have been summarised to illustrate a typical patient journey. The facilitators are things that were suggested as good practice by HCPs but which were often aspirational rather than current practice.

FIGURE 14.

Barriers to and facilitators of care for people with dementia and VI.

Balancing risks and benefits

Access to care was affected by the ways in which HCPs and family carers weighed up the risks and benefits of treatments for PLWD, such as surgery for cataracts or thrombolysis for stroke. Some of the factors involved in making decisions about care for people with dementia who have had a stroke are illustrated in Figure 15.

FIGURE 15.

Factors involved in decision-making for people with dementia who have had a stroke.

Factors that impacted on clinical decision-making across the three comorbidities included concerns about polypharmacy, a PLWD’s ability to co-operate with treatment, the ability to gain meaningful consent, severity of the dementia, levels of multimorbidity, the availability of support from a family carer and the presence of a family carer to act as a proxy and provide information.

It was clear that attitudes towards risk differed among clinicians. For example, in one focus group there were different opinions about the safety of taking someone off insulin:

it’s also going to be very risky to take them off insulin.

Diabetes consultant, diabetes focus group, south-east

you may decide that a blood sugar range of 5–15 is quite adequate for that person and you may be able to achieve that without insulin, so it is a question I do ask myself when I look after people’s diabetes, you know, is that something that we could safely offer.

Diabetes consultant, diabetes focus group, south-east

There were some data to suggest that attitudes towards risk were affected by previous experiences:

I wouldn’t refer someone who was uncooperative . . . I have had a patient who got up in the middle of a cataract operation and refused to have anything further done and lost the vision in his eye.

GP 4, south-east

It is also possible that attitudes towards risk change over time and as a HCP gains experience:

I think as you get more experienced, it’s quite a difficult decision but as you get more experienced your decision changes. I’m certainly quite . . . personally, I don’t know how others are but I certainly am quite aggressive about cataract surgery in people with dementia, I think that it’s got a very low downside, the chances of something going wrong are very remote and if you make it work and you make them function better then fine.

Ophthalmologist 1, London

Health-care professionals’ expectations and attitudes

Clinical decisions were influenced by HCPs’ attitudes and previous experiences of treating PLWD. There were contrasting attitudes towards the benefits of performing cataract surgery for PLWD. For example, one consultant was concerned about a lack of co-operation during surgery and thought that the benefits of improving vision for PLWD were sometimes ‘overplayed a bit’ (ophthalmic surgeon, VI focus group, East of England), whereas another was more positive about the benefits of surgery for PLWD:

I’ll do cataract surgery on most people because I believe it’s a very powerful intervention to make and the downsides are very low, different people have different attitudes, say in terms of the surgeon.

Ophthalmologist 1, London

There appeared to be an expectation among stroke clinicians and therapists that PLWD would not be able to co-operate with or benefit from rehabilitation, particularly if they had challenging behaviour.

Candidacy

Candidacy refers to the concept that access to health care is jointly negotiated between individuals and health services. For PLWD, family carers were key to this process, often acting as an advocate for their family member with dementia:

As a family member you’re the person who knows that person better than anyone else so you can see when it’s not, when it’s not right, when it’s going wrong.

Carer diabetes 4, south-east

It was like when she had her cataract done, I actually went into the room with her . . . you know, because one nurse at the cataract kind of looked at me and she said ‘no, if you wait in the waiting room’, I went ‘well, no – my sister has a memory problem so I’ll have to stay’.

Carer diabetes/VI 6, south-east

They were often also responsible for noticing when something was wrong and seeking help from the appropriate services. For example, one daughter noticed that her mother’s feet were going black:

Her feet were black and I was concerned, because we’ve got, in the paternal side of my family, she’s got aunts and her mother was blind, aunt had amputation of the toes.

Carer diabetes/VI 3, south-east

However, it had often taken carers some time to understand how systems worked, who to contact and what questions to ask. HCPs also recognised that those PLWD who lived alone or who did not have support from a carer were particularly vulnerable and may have poorer access to care:

the greatest difficulty is when that individual lives alone and doesn’t have an able partner, because then their care can become very disjointed or they’re not, they’re not able, often they, an appointment’s made or they, and they won’t answer the door or they forget and so it’s when somebody’s on their own that you have the biggest issues and lack of joined-up care.

Physiotherapist 1, south-east

Health-care professionals’ understanding/appropriate training

Many of the HCPs in our study, and across the three target conditions, appeared to feel unprepared to care for PLWD. Some of the HCPs referenced learning or training that was specific to the treatment and care of PLWD but this had been brief and did not appear to have impacted on practice:

I think a lot of people are aware that there hasn’t been apart from that one-off training that I’ve had recently, I haven’t seen a huge change in practice for dementia patients.

Physiotherapist, stroke focus group, south-east

Diabetes nurses in one focus group admitted that they had very little knowledge about dementia, and stroke physiotherapists in another group said that they had not received any dementia training. HCPs in the VI focus group said that they would like some dementia training to raise awareness in their field:

Just training really, just I think we just need that extra training just to, in this particular aspect, clinical and awareness of what to do.

Senior orthoptist, VI focus group, East of England

People living with dementia and their family carers provided many examples in which they felt that HCPs had not understood their needs, for example transport staff with no knowledge of dementia, clinic staff asking PLWD for details such as their medical history or date of birth that they had difficulty remembering or HCPs giving patients complicated medication regimes that they were unable to manage.

Screening and monitoring for long-term conditions

Access to appropriate screening and monitoring for people with conditions such as diabetes appeared to vary considerably, for example ranging from weekly home visits for some patients to irregular telephone monitoring for others. Some people reported that they were satisfied with the monitoring that they received for their condition whereas some carers of PLWD with diabetes were concerned that their relative was not receiving adequate monitoring. Diabetes specialist nurses and GPs expressed concerns that patients were not getting appropriate screening for their condition, such as foot checks. This was particularly a concern for housebound patients and those who lived alone:

And I think it’s only when [name of diabetes nurse in focus group] goes in that she can actually see, you know, that the devastation or whatever that’s been caused by possibly years and lack of input.

Diabetes specialist nurse, diabetes focus group, London

People living with dementia and their carers were often unclear about whether or not they were getting adequate foot checks and there was confusion over the different roles of chiropodists and podiatrists.

There were also problems with tests that were not geared towards PLWD:

she said you know, ‘can you read the third row of the chart’ or whatever he couldn’t, and she twigged that there might be a problem and called me in, I said ‘well he’s got dementia’, it’s on his diabetic notes but it obviously hadn’t gone through to the eye screening bit, so I think she tried him with numbers, he’s probably a bit better with numbers than he is with letters.

Carer diabetes 1, south-east

Health-care professionals also reported difficulties carrying out eye tests with PLWD and in some cases tests could not be carried out:

I get some dementia patients come the AMD clinic and usually with a carer of some description, and then we have the difficulty of assessing their vision because of them not being able to verbalise what they’re seeing, difficulty reporting symptoms.

Staff nurse ophthalmology, VI focus group, East of England

Patients with diabetes, stroke and dementia should receive routine monitoring as part of the QOF. However, it was clear that there was variation in the way that these assessments were delivered and GPs expressed concerns about whether or not all patients received these assessments, particularly those who were housebound. The dementia QOF appeared to be considered less of a priority than those for diabetes and stroke:

I think the diabetes, the heart disease, the stroke, you know, all those you know are more mainstream as it were, the ones that were given a lot of time and I think yes the dementia one would probably have been left, I certainly think we do achieve the QOF targets for it, but it is perhaps not at the forefront of people’s mind in the way that the diabetes one is, you know I suppose in terms that we don’t have a protocol for it, you know that wasn’t something I even and it hasn’t even kind of crossed my mind to be honest.

GP 8, north-east

Integrated practice

One suggestion for integrating primary and secondary care was the extension of the concept of integrated practice units (IPUs), with co-located care and access to shared health and social care budgets. 165 Porter and Lee165 suggest that the IPU should provide the full care cycle and treat not only the main condition but also related conditions and complications (such as eye disorders in people with diabetes). Within the UK there is a strong policy push towards better integration of care,166–169 which is seen as particularly important for addressing the needs of older people with complex health needs. 170 The Five-Year Forward View166 sets out the new care models programme, which includes integrated primary and acute care systems and multispecialty community providers. The aim of primary and acute care systems is to join up GP, hospital, community and mental health services and the aim of multispecialty community providers is to shift specialist care out of hospitals into the community. A number of vanguard sites will trial these models of care. 171

Although there are currently few formal evaluations of IPUs, as described by Porter and Lee,165 there are a number of systematic reviews that have looked at the effectiveness of initiatives for integrating care systems for older people. 172–174 One review of integrated funds for health and social care found mixed evidence of impacts on health outcomes, costs or resource use. 173 Barriers to integrated budgets included difficulties in implementing financial integration and differences in performance frameworks, priorities, governance and information systems. However, none of these reviews focused specifically on integrated care for people with dementia and comorbid health conditions and there is limited evidence on the care of patients with multimorbidity. 174

Integration on a smaller level was also recommended, for example linking community opticians and optometrists with memory clinics. A recent retrospective audit found evidence to suggest that a combined clinic with neurological, ophthalmic and psychiatric input is a potentially effective way to diagnose and manage complex vision problems in older people, including those with cognitive impairment. 175

Multidisciplinary assessment

Several groups recommended the use of multidisciplinary assessment and care. For example, diabetes specialists suggested a programme of joint assessment and review (with old-age psychiatrists) for people with diabetes who are diagnosed with dementia. There is evidence to support the use of comprehensive geriatric assessment (CGA) for older people. 176,177 A Cochrane review of CGA concluded that older people were more likely to be alive and in their own home after CGA. 178 The authors suggested that wards designed for CGA seem to be more effective than mobile teams. A UK study of CGA for older people considered to be at high risk of future health problems failed to show an effect on patient outcomes or subsequent use of secondary care, but the authors concluded that this was because their intervention did not deliver truly comprehensive CGA. 179

Information transfer and personalised information

Our qualitative data suggest that the transfer of patient information between professionals in different specialities and settings is a problem for patients, family carers and HCPs. This was reiterated by participants at the consensus conference. VI specialists recommended a system for flagging up a dementia diagnosis on records to ensure that specialists such as optometrists know when a person has received a dementia diagnosis. It was also suggested that the next of kin details for people given a dementia diagnosis should be clearly marked on GP records and that, with the consent of patients, family carers should be routinely copied into letters. This would help keep family carers informed and help to facilitate access to services for people with dementia.

Ideas/recommendations for improving information transfer also included the use of patient-held records, either electronic or paper, that could facilitate the sharing of information among patients and their carers, primary and secondary health care and social care. User-held records are part of an innovative memory service provided within a GP practice in Staffordshire. 180 Older people or their carers are supplied with hand-held applications to help co-ordinate their care, control their own records and trigger appropriate urgent support when required. The scheme has been well received by older people and their carers and there is some evidence to suggest that delivering this model has released savings in acute hospital activity. 181

It was also suggested that information transfer for people with dementia could be facilitated by expanding the ‘This is me’ document to include more health-related information. Participants cited schemes for people with a learning disability, such as the purple folders used in the West Hertfordshire Hospitals NHS Trust. 182 The ‘This is me’ document was designed for people with dementia who are receiving professional care in any setting. Although its use is supported by the Alzheimer’s Society and the Royal College of Nursing, it has not been formally evaluated.

Case management and care co-ordination

Case management for people with dementia and comorbidity was suggested by several groups as a way of assisting people with dementia to navigate health systems and improve their access to care. A number of systematic reviews have been reported of studies assessing the impact of case management on older people with dementia. 183–189 In general, studies have provided conflicting information about the potential benefits and duration of effect of case management for people with dementia. A recent Cochrane review of case management for PLWD found that the case management group was significantly less likely to be institutionalised at 6 and 12 months than those not receiving case management, although the longer-term effects were uncertain. 187 The authors found no significant differences in hospital admissions, mortality or patients’ or carers’ quality of life.

Assessing the impact of case management is complicated by the variety of models and differences in the way that the role is interpreted. 188,190 Differences include the type of care provided, the degree of collaboration and integration with other HCPs and the professional background of case managers. 191 Furthermore, it is not clear which population of people with dementia is most likely to benefit from case management and at what stage of the dementia trajectory. 185 Studies have, however, identified a number of characteristics that appear to be important for the success of case management and care co-ordination. These include strong provider and care networks, good personal connections with other HCPs, expert knowledge, embedding in the multidisciplinary team, the involvement of GPs, intensive and proactive approaches and clearly defined skills and responsibilities. 184,188,192–194

An example in which care for people with dementia is reported to have been successfully co-ordinated in the UK is the Oxleas Advanced Dementia Service, which provides care co-ordination, palliative care and support to people with advanced dementia living at home. 195 The authors of this report provide key lessons that they have learned: the need to provide care and advice to family carers; strong links between physical and mental health services; acceptance of referrals from a wide range of HCPs; a single comprehensive assessment of the patient and carer that addresses physical, mental health and social care needs; for a personalised care plan; and dedicated care co-ordination by a specialist nurse with suitable case management skills.

Dementia co-ordinators/support workers

Another recurring idea/recommendation involved the use of dementia co-ordinators or support workers to help people with dementia navigate health services. For example, one group suggested the use of dementia nurses in each hospital who would liaise between staff, relatives and the community and follow patients through their hospital stay. However, although it has been suggested that dementia specialist nurses with clearly defined roles could benefit people with dementia, there is little direct evidence for the effectiveness of dementia specialist nurses in hospital settings. 48,196 Moreover, there is anecdotal evidence to suggest that some specialist teams, such as those for palliative care, can have negative impacts, such as disempowering or deskilling other HCPs.

Parallels were drawn with learning disability liaison nursing, in which specialist nurses provide support for people with learning disability admitted to hospital. However, although there is evidence to suggest that learning disability liaison nursing is valued by stakeholders,197 and that promoting access and equity is an important part of the role,198 there appears to have been little formal evaluation of the role199 and its impact is unclear. Others suggested that the role of a dementia navigator could be non-clinical. For example, it was suggested that the role of the Stroke Association Life After Stroke Coordinators could be extended to include support for people with dementia who have had a stroke. There is some evidence to suggest that non-clinical dementia advisors can have a positive impact on PLWD and their family carers200,201 but there is a need for further testing of such schemes.

Negotiating continuity

People living with dementia and their family carers valued relationship continuity. In particular, the personal characteristics of HCPs, and the communication of information in a timely and sensitive manner, appeared to be key to developing a trusting relationship with a HCP. Relationship continuity did not always have to be with an individual but could be with a team, although this was dependent on good record-keeping and transfer of information between members of the team. Interviews with HCPs highlighted the way that relationship continuity facilitates access to health care for vulnerable patients.

Although some PLWD were still able to manage their condition and navigate health services, this was either because they were in the early stages of dementia or because of support provided by family carers. Family carers were often playing a significant role in managing and co-ordinating the care of their relative; this sometimes involved having to learn new skills such as checking blood sugar or giving insulin injections. The transition from self-management to dependency could be gradual or sudden (e.g. after a hospitalisation) and was often unpredictable or understood only in hindsight. HCPs whom we spoke to acknowledged the vital role that family carers played but from carers’ accounts it was clear that this recognition did not translate into their routine involvement in patient appointments or decision-making about the care of their family member. As in other studies we found that staff concerns about confidentiality may impede carers receiving information. 205

The absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions was a recurrent issue. This had implications for how appointments were planned and organised and how carers were involved. There appeared to be no cross-discipline approaches that supported the meaningful transfer of information about a person’s dementia and related disabilities; HCPs involved in delivering care for people with our target comorbidities commented that they were often unaware that someone had dementia. Instead, informational continuity was often provided by family carers attending appointments and transferring information between specialities. Despite evidence of awareness among staff that PLWD could need more time for consultations, clinic structures and pressures of patient numbers meant that there was generally little capacity to do this for PLWD. We found little evidence of services developing processes to support informational continuity or using tools such as ‘This is me’ to support continuity of information.

Negotiating access

Our interviews and focus groups provided many examples in which systems or environments had unintentionally blocked access to care for PLWD, for example appointments made over the telephone, long waits in busy clinic environments, tests that were not appropriate for PLWD, new technology introduced without proper explanation, lack of involvement of family carers and a failure to engage with social care. Pathways and guidelines for our three target conditions did not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD. Moreover, many HCPs in our study reported that they felt underprepared to care for PLWD. There were examples of good practice but this tended to be about the behaviour of individual practitioners rather than about system-based approaches.

The care and treatment that PLWD received were influenced by the expectations and attitudes of clinicians. Decisions about treatment were made in the context of concerns about polypharmacy, consent, concordance (including for medication, tests, rehabilitation and surgery), the severity of dementia, multimorbidity and frailty. Clinicians also had varying perceptions of the potential benefits of treatment for PLWD, with some expressing positive views about treating PLWD and others being more pessimistic and risk adverse. There was a suggestion from the interviews and focus groups that HCPs may sometimes have a negative attitude towards the ability of PLWD to participate in, or benefit from, certain treatments, such as post-stroke rehabilitation.

Hospital-based initiatives

In the scoping review (see Chapter 4) we considered some of the initiatives that have been developed with the aim of improving care for older people with dementia in acute hospitals. This includes liaison psychiatric services113 and specialist units that combine medical and mental health care for older people. 109 As yet, it is not clear if specialist units lead to better outcomes for PLWD or if these are the most appropriate care environments for PLWD who have acute care needs. For example, a person with dementia being admitted after a stroke may need to be in an acute stroke unit, or a person with dementia undergoing surgery for cataracts may need to be on an ophthalmology ward. The challenge from this study’s findings is how to make all staff practice and health-care environments appropriate for PLWD as well as investing in specialist dementia services to ensure that the behavioural and psychological symptoms of dementia are addressed within mainstream health-care provision.

Dementia-friendly environments

Recent years have seen a growing interest in initiatives designed to make health-care environments more dementia friendly. The UK government recently spent £50M on 116 projects aimed at improving environments for people with dementia in NHS and local authority settings. 219 There are a variety of tools and resources designed to improve the identification of people with dementia in busy acute environments and make health-care settings dementia friendly (e.g. the Butterfly Scheme,220 the Shining the Spotlight programme,221 the Pabulum Blue Book,222 ‘This is me’, Carer’s Passport,223,224 trust dementia portals). However, there have been few evaluations of their effectiveness and we found no evidence to suggest that these initiatives were being used in specialist services for diabetes, stroke or VI.

Ideas on person-centred care49,54,225 have had a considerable impact on approaches to the care of people with dementia in health-care settings. However, despite policy support for person-centred approaches to care for people with cognitive impairment,55,226 health services have struggled to deliver it. 227 The aim of initiatives such as ‘Getting to know me’ [see www.scottishcare.org/news/getting-to-know-me-dementia-resource-launched/ (accessed 5 January 2016)] or ‘This is me’ is to encourage health and social care professionals to see the person with dementia as an individual and deliver person-centred care that is tailored specifically to the person’s needs. 228 Although a number of HCPs in our study were aware of the ‘This is me’ tool, very few PLWD and their carers were actively using it. Moreover, dementia specialists reported that they were often not properly filled in. It was not clear from this study why such tools were not being used and more work is needed on their evaluation and promotion.

Holistic care

One approach that has been suggested for delivering holistic, integrated care to PLWD is collaborative care or case management. 229 In this approach a care/case manager co-ordinates care between professionals, liaises between primary and secondary care and utilises evidence-based care pathways to address both physical and psychosocial needs. Despite positive benefits for both PLWD and their carers in some individual trials,230 recent systematic reviews have found little clinical effectiveness or cost-effectiveness evidence to support widespread case management implementation beyond some quality-of-life benefits. 186,188,189 A recent pilot trial to evaluate the feasibility of case management in the UK struggled to successfully implement a nurse/social worker case manager intervention despite considerable support for this care approach from both patients and primary care teams. 190 However, this was largely because of the study coinciding with considerable organisational change within primary care. 231 In view of our findings of increasing physical comorbidity in people with dementia, such a model may require further testing as similar European health-care systems have managed successful integration into existing care. 192

Workforce development

In the UK, most chronic illness care of PLWD will be provided by GPs and their primary care teams. However, the 2007 National Audit Office report on improving services for PLWD232 found that, in its national GP survey, less than one-third of GPs felt that they had sufficient training to provide care for PLWD. Despite our rapidly ageing society, even current generations of doctors are not being adequately prepared to meet patient population needs, as medical student surveys have shown. 233 A recent recommendation from the Royal College of General Practitioners234 that GP training be extended to 4 years, to specifically include care of older people and management of multimorbidity, has not yet been implemented.

Despite a national policy push on dementia care through a national strategy25 and the Prime Minister’s dementia challenge,235 it would seem that we are still not adequately training our key community-based HCPs to meet societal need. 206 HCPs in our study consistently reported feeling underprepared to care for people with dementia. They raised concerns about generic issues such as behavioural and psychological symptoms but also condition-specific concerns, for example the best strategies for performing eye tests for PLWD, the best medication regimens for people with dementia and diabetes and approaches to rehabilitation for people with dementia who had had a stroke. This is consistent with a recent survey of dementia champions which suggests that dementia training should be specific to the clinical setting. 204

An assessment of dementia care between 2009 and 2014206 suggests that, although training initiatives such as that delivered via Health Education England236 and the Royal Colleges have led to improvements in care, more work needs to be carried out to improve training and education curricula. An audit of training in Hertfordshire and Bedfordshire found that uptake of dementia training may be greater among more junior staff, who have the most patient contact but who may lack authority to change practices. 204 Senior clinicians in our study showed an awareness of the needs of PLWD but many of the suggestions that they made for improving care for PLWD were aspirational rather than routinely implemented in current practice. It would appear that initiatives to increase staff awareness of dementia need to be further developed so that the needs of someone with a comorbid condition and dementia can be routinely accommodated into assessment, planning and review of care across all services.

The management of risk

There is a great deal of literature on the management of risk in dementia, particularly for those who are living independently at home. 237 For people with a comorbid condition such as diabetes, VI or stroke, the risk is even greater. Older people with diabetes and dementia are at greater risk of hypoglycaemia than older people without dementia. 238 Family carers of people with dementia and diabetes reported a number of ways in which dementia impacted on blood sugar control, resulting in hypoglycaemia and, in some instances, hospitalisation. This included family members with dementia forgetting that they had already eaten and eating twice or forgetting to eat at all. Carers also reported instances in which family members had forgotten to take medication or had taken medication (including insulin) more than once. The management of risk was a common theme in HCPs’ narratives, generally expressed in the context of uncertainty about what would be best for the patient, the family carer and the service. A more structured approach to the assessment of risk is needed that can help professionals focus on the PLWD and consider systematically the risk–benefit balance of different treatment options. The study findings suggested that at the moment this is very much at the discretion of the individual practitioner.

Carer inclusion and support

The CFAS analysis showed an increase in use of hospital services and unpaid care by people with dementia and a comorbid condition over the past decade. Analysis within CFAS II only showed that unpaid care was used substantially more by those with dementia and a target health condition than by those with the health condition alone. Previous analysis in CFAS has shown that fewer people are moving into care settings,164 which could, in turn, influence the use of unpaid care. It is well documented that those with dementia and their carers have difficulties with accessing the support that they need day to day. 239,240 This lack of appropriate community-based support could mean that individuals access health services at only their greatest times of need or crisis and may explain the increased hospital use. Some of the greatest barriers reported in terms of access to day-to-day services were the lack of communication between health and social care and a lack of formal training on dementia care available to those in community-based day-to-day services. Suggestions on how to improve access to day-to-day services included education and training on the impact of dementia on the management of other health conditions. 241

The challenges that carers of PLWD face are well documented. 23,242 Family caregivers of people who have dementia and other health conditions face additional challenges in managing both conditions and dealing with the impact of the accompanying behavioural and psychological symptoms of dementia on care routines. 102 Our study suggests that care pathways need to recognise the contribution of family members and, when available, incorporate their contribution in the care of PLWD. Pathways should include appropriate support for carers that addresses the possibility that carers do not want or cannot absorb the extra responsibilities of caring for someone with a condition such as diabetes. This support might need to focus on times of transition, for example from hospital to home after a stroke, or on the transition from self-management to dependency for a person with a long-term condition such as diabetes. Although services such as those provided by Admiral Nurses focus on the support of carers, there is relatively little understanding of which models of support are likely to be most effective or how they should be evaluated. 48 Moreover, it is not clear whether or not such services would be able to provide the appropriate support for carers of PLWD and a physical comorbidity such as diabetes or VI.

There is an increasing recognition of the importance of strengthening relationships between patients, carers and professionals. 243,244 In the USA the Institute for Patient- and Family-Centered Care245 set out four core concepts of patient- and family-centred care: dignity, respect, information sharing, and participation and collaboration. Its approach is based on the premise that families are crucial allies for quality and safety and that the individuals most dependent on health care, such as the very old and those with chronic conditions, are also those who are most dependent on families.

In the UK the triangle of care model50 focuses on carer inclusion and support. Originally developed for mental health service users the model has been adapted to meet the needs of carers of people with dementia in acute hospital. The model (Box 9) requires that staff are willing to collaborate and engage with PLWD and their family carers and involve the carers in decisions about the care and treatment of their relative. Although HCPs in our study acknowledged the importance of family carers, they did not generally articulate this in a way that addressed the clear expectations outlined in the triangle of care model. The model requires further testing and development, specifically on how it is implemented and how it can address issues such as confidentiality, the involvement of multiple carers or divergence of opinion between the PLWD and the carer. It also cannot address the needs of someone whose carer network involves loose ties or shifting patterns of unpaid support.

Stroke

Diabetes

Vision impairment

Target comorbidities

Dementia as well as stroke

Dementia as well as diabetes

Dementia as well as vision impairment

Dementia as well as any one of the target comorbidities

Stroke

Diabetes

Vision impairment