Constructing the sampling framework
Sample selection for the survey of Admiral Nursing services
Dementia UK provided us with a list of current AN services in the spring of 2016, from which we selected those that were providing the ‘standard model’ (see Chapter 2 for the definition of this term). We then matched the sites to LA areas in order to facilitate matching of the non-AN areas, usually by contacting the services to establish which postcode areas they covered. We also examined current caseload sizes to ensure that with 16 sites we would be able to achieve our required sample size, and excluded those with fewer than 35 service users. Some services that we subsequently contacted for inclusion did not feel able to participate at that point. By the end of this process, we had 17 eligible services, one of which did not respond to our contacts.
The 16 services selected had, between them, around 3230 clients on their active caseloads and we calculated that we needed to generate a sample size of around 480 clients to achieve the desired number of returned surveys of around 160 (assuming a 30% response rate). However, there was wide variation in the numbers of clients between the services: from 40 clients in the smallest service to 974 clients in the largest service. To create a representative sample of individuals from the totality of AN services selected, we therefore identified individuals using a sampling fraction of 1 in 6 (or around 17%).
A random number between 1 and 6 was generated for each site using Stat Trek (https://stattrek.com). Sites ordered their current caseload either by date of most recent contact or alphabetically by surname, depending on their current practice. We then instructed them to select the nth case (where n was the randomly generated number for that site) and every following sixth case, to the end of the caseload. Based on the caseload numbers the sites had given us, we expected this to generate a sample of around 484 carers. Because of some increase in caseloads between issuing the sampling fractions and the services selecting carers, 497 carers were eventually identified and sent a paper questionnaire.
Comparison group sample
We identified 16 ‘broadly similar’ areas in terms of statistical neighbourhood, as defined by CIPFA’s statistical model. Statistical neighbourhood is used by LAs themselves and across government to allow comparisons between authorities that are similar in terms of population size and characteristics, such as age distribution, deprivation and ethnicity. The tool eventually used was the Department of Health and Social Care’s social care efficiency tool (www.gov.uk/government/publications/adult-social-care-efficiency-tool), which is based on the CIPFA model.
Learning from the challenges we had faced recruiting carers to WP 2 (for the qualitative interviews and focus groups with carers, see Chapter 4), we worked with Join Dementia Research (JDR) and a number of local voluntary-sector organisations in the matched neighbourhoods, as well as TiDE, to identify and recruit current carers. Despite us taking this multipronged approach, recruitment in these matched areas was labour intensive and very time-consuming.
Over 500 paper questionnaire packs were posted out and over 400 e-mails with the link to the e-survey were distributed to non-AN areas. The link was also advertised online on multiple websites. Details of where and to whom the questionnaire packs and e-mails were sent are given below:
Through JDR, 103 carers were e-mailed the questionnaire and a further nine people received a hard copy through the post.
Together in Dementia Everyday contacted 31 carers directly (28 by e-mail and three by post), as well as publicising the survey more generally through e-mail and social media.
Fifteen local voluntary-sector organisations (mainly local carers’ groups) were sent a total of 427 hard-copy packs, and six of these organisations also advertised the survey online or by e-mail. One of these organisations e-mailed the link to 300 carers of people with dementia in their locality.
Three local NHS partners were sent a total of 72 hard-copy packs (but we know that at least 10 of these were never distributed).
Seven further organisations (local and national) advertised the survey online or by e-mail.
Responses
Calculating an overall response rate for our survey is impossible, because we can be sure about the number of questionnaires or links distributed for the AN and the JDR groups only. Although we know how many paper questionnaires we sent to control-area third-sector organisations, we do not know how many they actually handed on. Furthermore, although we know to which organisations we sent the electronic survey, we do not know how many people received the link but chose not to open it.
After the survey was distributed, we had 10 responses from carers who told us that the person they had been caring for had died. We contacted this group to thank them for letting us know and to pass on our sympathies. A further six questionnaires were returned as undeliverable and two people contacted us to tell us that the person they had cared for was now in long-term care. Six paper questionnaires were returned blank, which we classed as refusals.
In total, we received 430 responses to the survey, either by post or electronically; however, not all were usable or within our scope. First, 22 electronic surveys, all from those contacted via the third sector, had been opened, but no data had ever been entered. We classed these as refusals. Second, 37 carers told us that the person they cared for was living in long-term care and 25 carers told us that they were no longer caring for a person with dementia. Both of these groups were outside the scope of our survey, which focused exclusively on those currently caring for a person with dementia who was still living in the community.
Table 36 in Appendix 3 summarises what we know about how many paper questionnaires or links to the electronic survey were distributed and the numbers of refusals or out-of-scope responses we had from each source. Twenty-six per cent of the paper questionnaires we distributed to the AN services and third-sector organisations were returned to us and were within the scope of our survey, but without knowing the total number actually passed on to carers we cannot calculate an overall response rate. For the two organisations for which we knew how many links were sent to carers, 25% and 43% of carers provided in-scope responses.
In total, we received 346 completed questionnaires that were within the scope of our survey, 158 (46%) of which were from AN service users in our selected areas and 188 (54%) of which were from carers in non-AN areas.
Description of the whole sample
In describing the whole sample of carers we surveyed, we compared them with carers of people with dementia identified in the most recent nationally representative, detailed survey of carers: the Survey of Carers in Households – England, 2009–10 (SCH).67 This comparison helps us to understand whether or not the group as a whole could be considered to be representative of all carers of people with dementia (see Appendix 3, Table 37, for a full comparison).
shows that our survey sample as a whole was broadly similar in respect of the sex of the carer, although a higher proportion of our survey carers were in the older age groups. Our survey carers were more likely to be caring for a man with dementia and somewhat less likely to be caring for someone over the age of 75 years than the SCH carers ().
The sex and age of the carer: SCH carers and carers from our survey.
The sex and age of the person with dementia: SCH carers and carers from our survey.
Beyond this, however, our survey carers were very different from the SCH carers, in that they were much more likely to be supporting a spouse or partner, much more likely to be heavily involved in caring (providing both personal and physical care) and much less likely to be in paid employment ().
Relationship of the person with dementia to the carer, the type of care provided and paid employment: SCH carers and carers from our survey.
Our survey sample was thus different in several important respects from the carers of people with dementia included in the nationally representative sample of carers.
However, the SCH was a large survey of over 2000 adult carers of people with any condition, and only a single question differentiated between those caring for someone with dementia and other carers. Furthermore, the SCH was carried out before the recent policy emphasis on the importance of the diagnosis of dementia and the consequent increase in the numbers of people who know what their condition is. It is possible that a repeat of the SCH now would reveal both a higher proportion of carers reporting that they supported someone with dementia (11% of the total in 2009–10) and, therefore, a different pattern of socioeconomic characteristics. However, the differences between the carers in our survey and the SCH carers are so large that it seems unlikely that even this change would increase their comparability. The ways in which we recruited our carers – through service providers and third-sector organisations – perhaps inevitably led us to the most heavily involved and vulnerable (by virtue of their age) carers who needed support and had started to access it.
Comparison of Admiral Nursing and non-Admiral Nursing area carers
Demographic and socioeconomic status
By matching the AN and non-AN areas using a statistical neighbourhood approach, we hoped to minimise the differences between possible service outcomes for the two groups based on local characteristics, such as expenditure on older people’s services and the proportion of older people living in the area. However, given that all AN carers were, by definition, using at least one service, we expected that our matching approach would not necessarily produce matching groups of carers in terms of their demographic and socioeconomic status. Our analysis (see Appendix 3, Table 38) shows that the main differences between the two groups were in the age of the carer and in the variables related to that age difference.
Respondents receiving AN support were more likely than those not receiving such support to be over the age of 75 years, caring for a spouse/partner, the main or sole carer, caring for someone with vascular dementia, without formal educational qualifications and retired from paid work. By contrast, respondents not supported by an Admiral Nurse were more likely to be caring for a parent/in-law, caring for someone with Alzheimer’s disease, aged between 45 and 54 years, educated to master’s degree level or above and in full-time work.
The differences in the carers’ ages are obviously related to the differences in relationship (older carers are more likely to be spouses/partners and younger carers are more likely to be children or children-in-law of the person with dementia) and to the differences in educational and economic status. The differences in the type of dementia are more difficult to explain, given that there was little difference in the ages or sex of the people with dementia in the two groups. The differences in main/sole carer status is perhaps explained by the natural history of caring in dementia; that is, when people with dementia are married or in a partnership, the spouse takes on the main caring role until the point when she or he has become too old and frail to continue alone. At this point, the help of a daughter or son may enable the person with dementia to remain at home and the spouse/partner is thus no longer the sole or main carer.
Caring activity
The information that carers provided about the caring tasks they carried out was summarised using the typology developed by Parker and Lawton68 and used subsequently to analyse large national surveys of carers.7,68,69
The typology categorises six types of caring activity: personal and physical care; personal but not physical care; physical but not personal care; practical care without personal or physical care; practical help only; and other combinations not including personal, physical or practical care. These categories have been shown to distinguish between more heavily involved and less heavily involved carers in terms of total hours of care, carer status, impact on employment and other carer characteristics.68
Admiral Nursing carers were more likely than carers in non-AN areas to be involved in the heaviest type of care (personal and physical care: χ2 = 5.57, df = 1; p = 0.018).
The distribution of total hours for which carers said they provided care to the person with dementia was highly skewed, with 18% of all respondents reporting that they had spent the maximum possible number of hours (24) caring the previous day. We therefore used non-parametric statistics to explore the differences between carers in AN and non-AN areas. This showed that AN carers reported caring for significantly more hours than did carers in non-AN areas (Wilcoxon test, z = –2.599; p = 0.009). Almost one-third of AN carers (31%) reported caring for 18 hours or more the day before the survey, compared with 19% of carers in non-AN areas. Table 39 in Appendix 3 shows the data recoded into quartiles. The largest difference lies in the ≥ 18 hours category.
Income
Given the differences between the two groups’ economic status, household incomes were more similar than expected at the lower end. Similar proportions (28% and 27%) had gross incomes of £15,000 or less per year. At the higher end, however, 16% of AN carers had gross household incomes of £35,000 and above, compared with 28% of carers from non-AN areas. The number of carers who chose to answer this question (243/346) was lower than for any other question, so these data need to be interpreted with care. The related question about how people felt that they were managing financially, however, was answered by more people (310/346), and this showed a significant difference; in total, 72% of AN carers said that they had ‘some’ or ‘severe’ financial difficulties, compared with 50% of non-AN area carers (χ2 = 13.62, df = 5; p = 0.018).
Outcome measures
Before we could examine the relationship between AN and non-AN area carers in terms of our chosen outcome measures (see Chapter 6), we needed to explore whether or not any of the variables on which the two groups varied significantly also varied significantly with these outcome measures, across the whole group. This analysis is reported in Appendix 4 (see also Appendix 3, Tables 40–46).
The overall conclusion from this analysis was that the age of the carer was a major driver of the other socioeconomic differences we saw between AN carers and those from non-AN areas. However, the type of dementia that the person being supported had and, for ASCOT-Carer only, the carer’s status and activity (sole/main carer or not, type of care provided and hours of care) may also be crucial areas to be controlled for when comparing the outcome measures.
Overall, we gained the sense that the EQ-5D-5L worked as it should: reflecting carers’ underlying state of health, with some dimensions (mobility, usual activities and pain) being affected by age but not, by and large, by caring status or activity.
The ASCOT-Carer also seemed to work as it should: reflecting caring status and activity but not, by and large, the carer’s age. However, the ASCOT-Carer did seem to be sensitive to the nature of the relationship between the carer and the person being supported, with spouses/partners having poorer scores. There was also a relationship between type of dementia and ASCOT-Carer scores (with those caring for people with Alzheimer’s disease seeming to fare better than those caring for people with vascular and ‘other’ dementias), which deserves future investigation.
The SEMD measure showed relatively few differences related to carer characteristics, caring status and activity or type of dementia. However, we found higher levels of confidence about finding and arranging services among those caring for people with Alzheimer’s disease, and a non-linear relationship with hours of care, which could suggest that the SEMD measure is sensitive to service support.
The outcome measures for AN and non-AN area carers are compared in Chapter 6.
Carers’ use of services
We asked a range of questions about the health and social care services that carers and the person with dementia had ever used and were currently using.
Admiral Nursing service use
We started with a section about the use of AN services and guided respondents either to an explanatory leaflet that came with the paper questionnaire or to a link to the AN website that was included in the electronic questionnaire. However, despite this and the fact that we had selected half of our sample via AN services and half via organisations in areas in which there were no AN services, some people in the former half of the sample said that they had never used AN services and some in the latter half said that they had. In both cases, evidence from answers to other questions suggested misunderstanding in both halves of the sample. AN service users who said that they had never used an AN service were mostly people who later reported that they attended carers’ groups; it might have been that they did not know that the group they attended was run by an Admiral Nurse. Among non-AN area respondents, there was again some misunderstanding, with some claiming to have used ‘other’ types of AN services, such as sitting services, where no such services exist in reality. It is also possible that some carers in non-AN areas had used AN services that had subsequently closed, or had previously lived somewhere that did have AN services.
Because of this issue, the analysis in this subsection, in which we explored carers’ experiences of using AN services, is based on the 140 carers who were identified via AN services and who were aware that they had used an AN service.
More than half of the AN service users were recent: 54% had first used an AN service in the previous 12 months and only 6% had been in contact for 5 years or more. The majority (90%) had been in contact most recently in the previous 6 months. Face-to-face visits from Admiral Nurses were the most frequent type of contact reported (94%), followed by telephone contact (54%), AN group meetings (20%) and e-mail contact (10%). As these figures suggest, most people had more than one type of contact with the service.
The two-thirds (n = 89; 65%) of carers who had been in any AN contact in the previous 4 weeks were then asked how many of what type of contact there had been (see Appendix 3, Table 47).
In total, 89 carers had had at least 193 contacts, of different types, with an AN service in the previous 4 weeks (an average of 2.2 each). Of these, face-to-face visits and telephone calls were the most frequent.
Those who had been in contact with an AN service in the previous 4 weeks were asked about a range of types of support they might have received. Providing emotional and social support to the carer (mentioned by 90%) and providing information, advice and knowledge (92%) were the most frequently reported types of support, followed by practical help, including liaison with other services (75%) and assessing the carer’s needs (72%). Less often mentioned were attending support groups and carer training (26%), and recommendations about medication for the person with dementia (21%). Educating and supporting other professionals in touch with the carer (12%) and clinical examination of the person with dementia (7%) were reported less frequently. Two carers mentioned other types of support: one mentioned that the Admiral Nurse had facilitated a meeting with another carer and one mentioned that the Admiral Nurse spent time with the carer.
Other services intended for carers
There are other services specifically intended to support carers, although they may also help the person with dementia. All carers were asked if they had ever used short breaks/respite, when the person with dementia is looked after away from home; services when someone sits with the person with dementia or takes them out during the day to give the carer time for themselves; night-time sitting services to enable the carer to get a full night’s sleep; carers’ advice services; and support groups for carers.
It was clear from subsequent answers given about day care services (the main purpose of which is to provide activity for the person with dementia during the day) that some carers had misinterpreted the short breaks/respite category (which we had intended to be understood as care away from home for more than 1 day to provide the carer with an extended break) as day care. This confusion had not been evident during the cognitive interviewing (see Chapter 4). When it was clear that this misunderstanding had occurred, we recoded the data appropriately. When it was not clear, we left the answers as originally given. It is therefore possible that this category of carer support service may be slightly over-represented and that day care may be slightly under-represented. The totality of support to carers and the person with dementia, of course, remains the same.
Given the age and level of involvement of the carers in our survey, the proportions receiving any kind of support services that gave them some space for themselves was low: 15% had ever used respite care, 26% had ever used a sitting or ‘taking out’ service and 4% had ever used a night-sitting service. Rather more had used a carers’ advice service (45%) or had attended a carers’ support group (41%), which is not surprising, given the way in which we identified carers.
There were some differences between AN carers and non-AN area carers: AN carers were significantly more likely than non-AN area carers ever to have used a respite service (20% and 11%, respectively; χ2 = 4.32, df = 1; p = 0.038) and less likely to have used a carers’ advice service (39% and 55%, respectively; χ2 = 8.49, df = 1; p = 0.004). Again, this last finding is not surprising, given that we found many of our non-AN area carers via third-sector organisations that run advice services. There were no other differences between AN carers and non-AN area carers in relation to ever having used services for carers.
We asked those who had ever used these services what type of support they felt that they had received from them. As Table 48 in Appendix 3 shows, this question distinguished well between the types of support that different services provided to carers. Thus, time for themselves or to allow them to do other things was mentioned by almost 8 in 10 of those who had used respite and day-sitting/taking out services, whereas half of the small numbers who had used a night-sitting service reported this as an outcome. By contrast, half of those who used carers’ support groups reported receiving emotional or social support from these groups, whereas the most frequently mentioned type of support gained from carers’ advice services was information, advice and knowledge (mentioned by 76% of those who had used this service). Overall, these figures suggest that our sample found carers’ support groups less helpful than carers’ advice services.
A small number of carers who had used each of the services had found them to be of no support at all.
Carers were much less likely to report recent use of all of these services (see Appendix 3, Table 49), suggesting very low levels of ongoing support. For example, only 17% of all carers reported having attended a carers’ support group in the previous 4 weeks. Recent use was different for carers in AN carers and non-AN area carers only in relation to this type of support; as might be expected, given how we recruited carers in the non-AN areas, AN carers were less likely to have attended a support group recently (32% and 48%, respectively, χ2 = 3.84, df = 1; p = 0.05).
In terms of the perceived usefulness of the services used recently (see Appendix 3, Table 49), we found lower levels of reporting of emotional and social support and receipt of information, advice and knowledge than we found among recent AN service users.
A small number of carers had used services frequently in the previous 4 weeks: 5 out of the 21 carers who reported using respite had done so eight times, 12 out of the 64 carers who had used day-sitting/taking out services had used them 10 times or more and two out of the seven carers who had used night-sitting services had done so 10 times or more. By contrast, most of those using advice services (33 out of 50) reported only a single use, as did 35 out of the 57 carers who had been to a carers’ support group. Only one carer reported using a carers’ advice service and one reported using a carers’ support group 10 times or more in the previous 4 weeks.
In total, 60% of all carers reported no use of a service for carers in the previous 4 weeks, 25% of carers had used one service, 11% of carers had used two services and one person had used four services. There was no difference between carers in AN carers and non-AN areas in whether or not they had used a carer service recently. Nor was there any difference between older and younger carers or between those who were more or less involved, whether this was defined by hours of care, number of care tasks undertaken, main carer responsibility or type of care provided.
On the face of it, this might suggest poor targeting of services for carers, that the services on offer are not reaching those in most need or that the services on offer are not what carers want or need. We therefore looked at current carer service use by our outcome measures. This showed no relationship between any of the ASCOT-Carer domains or the total ASCOT-Carer score and carer service use. One EQ-5D-5L domain – anxiety and depression – was significantly related to current carer service use, with service users being more likely to report problems in this domain than those who were not using services (84% and 74%, respectively; χ2 = 4.64, df = 1; p = 0.031). Those currently using carer services had significantly poorer total SEMD scores on symptom management efficacy than those who were not using carer services (mean ranks 143.36 and 164.74, respectively; Wilcoxon W, z = –2.081; p = 0.037).
Looking at each type of service by each type of outcome measure showed few relationships. However, there are one or two that are worth mentioning. First, carers using day-sitting/taking out services were more likely than those who were not using these services to report problems in the EQ-5D-5L anxiety and depression domain (80% and 58% respectively; χ2 = 4.57, df = 1; p = 0.032). This was also the case with those who were using night-sitting services compared with those who were not (86% and 63%, respectively), but the numbers involved were small and the difference did not reach statistical significance. Those using carers’ advice services were also more likely to report problems in this domain (92% and 77%, respectively; χ2 = 4.95, df = 1; p = 0.026).
All of those using respite services reported problems in the ASCOT-Carer domain related to how they spent their time (100% compared with 79% of those not using respite; χ2 = 4.95, df = 1; p = 0.026). Carers using respite were also more likely to report problems in feeling that they had control over their lives (95% and 74%, respectively; χ2 = 4.11, df = 1; p = 0.043). There was no other relationship between any ASCOT-Carer domain and use of any carer service in the previous 4 weeks.
None of the SEMD individual questions, or the SXEFF and SERVEFF scores (see Chapter 4), showed any relationship to recent use of any carers’ service.
Of course, different types of services may be related to different types of outcome measures in different ways. For example, one would hope that those using respite or sitting services would feel that they had more time to be themselves, whereas those using advice services would feel more confident about their knowledge about dementia and about services. However, given that it is not possible to distinguish cause from effect in this cross-sectional survey, it may be found that carers using such services report more problems in these areas because services have been targeted at their specific concerns.
Future multivariate analysis is clearly necessary to explore the relative contributions of carer characteristics, carer involvement and carer services to outcome assessment.
Health service use by carers
In the 4 weeks before completing the questionnaire, 45% of carers had seen their GP and 16% had seen a practice or district nurse (see Appendix 3, Table 50). In terms of hospital-based services, 23% had had at least one outpatient appointment. Table 50 also reports the average number of contacts per carer and the average number of contacts per carer using the service.
There was only one difference between AN carers and non-AN area carers in terms of hospital or primary care use: AN carers were significantly more likely to report having seen a nurse specialist of some type in the previous 4 weeks than were non-AN area carers (11% and 4%, respectively, χ2 = 4.59, df = 2; p = 0.032). This question did make it clear that we did not want carers to include in their response any contact with an Admiral Nurse, so this may suggest that AN carers were more likely to be seeing other nurse specialists in addition to using the AN service.
The lack of other differences in health service use is slightly surprising given that the AN carers were significantly older than those in non-AN areas and that older people are usually seen as more frequent users of health-care services.
Further analysis of health service use by age and level of involvement of the carer (main carer status, hours of care provided in the previous 24 hours and type of care provided) showed only one relationship: those caring for a relatively small number of hours (0–5 hours) were more likely to report having seen a therapy health professional (21%, compared with 12% of all carers; χ2 = 8.52, df = 3; p = 0.036).
Examining our outcome variables and health service use throws up some interesting and, in the case of ASCOT-Carer, some potentially disturbing results (see ).
Relationships between carers’ use of health services by carer needs in outcome domains (statistically significant relationships only)
First, as one might expect, as a health status measure, problems in some domains of the EQ-5D-5L – mobility, ability to carry out usual activities and pain – were related to health service use in the previous 4 weeks and, in particular, to seeing a GP.
Analysis of the ASCOT-Carer data showed some relationships between needs and health service use, despite the fact that the ASCOT measures are not designed to be sensitive to health service use. In particular, having needs in the ‘feeling safe’ domain was related to more use by carers of outpatient and other hospital appointments, seeing the GP and seeing a practice or district nurse. Although our data are cross-sectional, these relationships give pause for thought: are carers using more health services because not feeling safe affects their health indirectly or, more worryingly, because it affects their health directly through physical injury?
Some of these outcome domains were also related to overall health service use. So, with the EQ-5D-5L, 60% of those who had used health services three or more times in the previous 4 weeks reported mobility problems, whereas only 31% of those who had not used health services had mobility problems (χ2 = 12.89, df = 3; p = 0.005). Similarly, 74% of those using three or more services reported problems in carrying out their usual activities, compared with 46% of those who used no health services. With ASCOT-Carer, 23% of those who reported three or more uses of health services had needs in relation to feeling safe, compared with 6% of those who reported no use of health services (χ2 = 14.06, df = 3; p = 0.003).
As there was little relationship between carer age and the use of individual or total health services, the EQ-5D-5L results shown in presumably reflect differences in health unrelated to age. It is also possible that the ASCOT-Carer relationships reflect physical injury sustained as a carer, but this remains to be explored in future research.
Use of services by the person with dementia
Health services
We also asked carers who were completing the questionnaire how many times the person they supported had used health services in the previous 4 weeks. Responses highlighted the importance of primary care – both GPs and practice and district nurses – in the lives of people with dementia (see Appendix 3, Table 51). Over half had seen a GP in the previous 4 weeks and just under one-third had seen a nurse. However, there was also a relatively high use of outpatient appointments, with almost one-third of respondents reporting this. For those who had used a service recently, the average number of contacts was highest for practice or district nurses, therapy professionals and nurse specialists.
There were no significant differences in the use of individual health services or the total number of services used in the previous 4 weeks by the person with dementia between AN carers and non-AN area carers.
There were no obvious relationships between the use of services and the age of the person with dementia. The only statistically significant result here was non-linear; people aged 75–84 years were less likely (23%) and those aged 85–94 years were more likely (44%) to have seen a practice or district nurse in the previous 4 weeks than all people with dementia (30%) (χ2 = 12.04, df = 5; p = 0.034), but there was nothing that suggested a clear relationship with increased age. These are surprising findings, given the relationship between age and health service use in the general population.
Carers who reported that the person they cared for had a type of dementia other than Alzheimer’s disease or vascular dementia were more likely to report that the person had had an outpatient appointment in the previous 4 weeks [25% of people with Alzheimer’s disease, 27% of people with vascular dementia and 46% of people with another type of dementia (χ2 = 7.11, df = 2; p = 0.029)]. There was also a tendency for men to be more likely to have had an outpatient appointment (34% of men and 24% of women), but this difference did not reach statistical significance. These differences are not explained by the recency of symptoms (when one might expect more contact with health services). Indeed, there was no relationship between any type of health service used in the previous 4 weeks and how long carers reported being aware of the person’s symptoms. However, men were significantly more likely to have ‘other’ types of dementia, so there is clearly some clustering of difference here. Looking behind the ‘other’ classification, men in the survey were more likely than women to have Parkinson’s disease-related dementia, Korsakoff syndrome/alcohol-related dementia or corticobasal dementia. It may be that services for these conditions are more developed than those for other types of dementia, or perhaps that services stay in contact with these patients for longer after diagnosis.
People with vascular dementia were more likely than others to have had a planned overnight admission to hospital [0% of people with Alzheimer’s disease, 5% of people with vascular dementia and 2% of people with another type of dementia (χ2 = 9.33, df = 2; p = 0.003)], but numbers, and thereby cell sizes, were small here, so this difference needs to be interpreted with care. Men were also more likely to have used this type of service [3% of men and 0% of women (χ2 = 4.77, df = 1; p = 0.029)], but there is the same proviso about small cell sizes.
There were no relationships between whether or not the person with dementia had a formal diagnosis of their condition and the use of any health service.
Finally, we looked at health service use and the level of severity of dementia, as reported by the carer. There was a single statistically significant relationship here: those reported as having ‘mild’ dementia were more likely (25%), and those reported as having ‘moderate’ dementia were less likely (10%), to have seen a therapy professional in the previous 4 weeks than those with ‘severe’ dementia (17%) (χ2 = 6.35, df = 2; p = 0.042).
Social care services
We asked carers whether the person with dementia had made any use of day care, home care, meals services and memory cafés, or if they had had an appointment with staff from social services in the previous 4 weeks.
Carers reported that the majority of people with dementia had not recently used any of the individual services we asked about (). However, counting up use across all of these services, 59% of all carers reported some use in the previous weeks, with an average of at least nine contacts during that time. As this contrast suggests, some individuals had used multiple social care services recently and, among those who had, some had had many contacts. For example, those using home care had at least an average of 8.39 contacts in the previous 4 weeks.
Use of social care services by the person with dementia (reported by the carer)
In a few cases, the carer did not know whether or not the person with dementia had used the service; this is why the row percentages in do not always sum to 100%.
There were differences between the AN carers and the others in terms of use of two individual services. Non-AN area carers were more likely than AN carers to report the use of ‘other’ types of day service (i.e. not day care centres): 14% versus 6%, respectively (χ2 = 5.54, df = 1; p = 0.019). Non-AN area carers were also more likely than AN carers to report the use of memory cafés (27% vs. 11%, respectively) (χ2 = 13.69, df = 1; p < 0.001).
We also examined whether or not any characteristics of the person with dementia or the carer were related to individual service use. We examined the sex and the age of both the person with dementia and the carer, how long symptoms had been present, whether or not a formal diagnosis had been received, reported severity, the relationship between the person with dementia and the carer, main carer status and the type and hours of care provided. Relatively few of these characteristics were statistically significantly related to service use (see Appendix 3, Table 52).
Five services did show some relationship to the characteristics of the person with dementia or the carer: day centres, other types of day care, home care, meals and attendance at a memory café.
Women with dementia were more likely to have used other types of day care and home-care services in the previous 4 weeks, whereas men were more likely to have attended a memory café. Although people with Alzheimer’s disease were somewhat more likely to have used a memory café than people with other forms of dementia (although this difference did not reach statistical significance), men were less likely than women to have Alzheimer’s disease, as we saw earlier. However, men with dementia in our survey were significantly less likely to be over the age of 85 years, so this may explain the difference.
Home care was more likely when the person with dementia was aged 85 years or over, but both day centre and memory café use were less likely for this age group. Those aged 65–74 years were more likely than other people with dementia to have used a day centre. Day centre use and other day care services were also related to the reported severity of dementia, with those in the ‘severe’ category being more likely than others to have used these services recently. When the carer reported having been aware of the symptoms of dementia for under a year, meals provision was more likely.
There were only two areas in which the nature of the caring relationship was related to service use. Those caring for a parent/in-law were much more likely, and those caring for a spouse/partner were much less likely, to report the use of home care, whereas those caring for 6–11 hours were more likely to report meals provision.
Some of these differences make sense in terms of the progression of dementia (day care being more evident when dementia is severe, but with extreme age likely to depress its use) or what we know from other work on the services that are in place when a carer is also present (home care use is more often in place when the person with dementia is female and/or very old, but it is less often in place when the carer is supporting a spouse or partner). One can also understand why very old people with dementia might not be using memory cafés, which in turn may explain the sex difference in the use of this service.
Non-AN area carers were more likely to report the use of any kind of social care service (63%, compared with 55% of AN area carers), but this difference was not large enough to reach statistical significance (χ2 = 2.11, df = 1; p = 0.146). Nor was there any difference between the groups in the reported total number of contacts with social care services over the previous 4 weeks (Wilcoxon W test, z = –1.029; p = 0.304).
We also explored any social care service use alongside the characteristics of the person with dementia and the carer. Neither the sex of the person with dementia nor their age was related to total social care service use.
People with a formal diagnosis were more likely to be using any social care service [62%, compared with 46% of those without a formal diagnosis and 0% of those for whom the carer did not know if a diagnosis had been given (χ2 = 8.88, df = 2; p = 0.012)]. However, neither the type of dementia nor the length of time for which the carer reported that symptoms had been evident was related to social care service use. By contrast, reported severity did play a part: 72% of people whose carer reported that the dementia was ‘severe’ had used some form of social care service in the previous 4 weeks, compared with 58% of those with ‘moderate’ dementia and 46% of those with ‘mild’ dementia (χ2 = 8.15, df = 2; p = 0.017).
The sex and age of the carer were not significantly related to the use of any social care service, and nor was the relationship of the carer to the person with dementia. However, there was a relationship with whether or not the carer had the main, or the sole, responsibility for caring. Those defined as a ‘joint main carer’ were less likely to report any use of social care services (29%) than those who were the main/sole carers (61%) or who did not have the main responsibility as a carer (67%), and this difference was statistically significant (χ2 = 6.32, df = 2; p = 0.043). Despite this, there was no relationship between the intensity of the carers’ involvement, as defined by the type of care being provided or the total number of hours of care provided, and the use of any social care service.
Unlike health services, social care services are not necessarily free at the point of use, as they are subject not only to assessment of need, but also to means testing, if the LA social services department becomes involved. Furthermore, as there is an active private market in social care, individuals with adequate resources can bypass the assessment of need and pay directly for services themselves. These issues make it difficult to determine here the extent to which services are responding to need or if individuals are making their own judgements about what they require to help the person with dementia to continue to live in the community. We move on to these issues in the next section, in which we examine which services carers and the person with dementia paid for.
Paying for services
In terms of services intended for carers, four out of five of the carers who had used respite in the previous 4 weeks said that they or the person with dementia, or both, had paid for the service. Half of those who reported using a day-sitting service, two out of the seven who had used a night-sitting service and 1 in 10 of those attending a carers’ group also reported payment for the services. No one reported paying anything for using a carers’ advice service.
Payment was also common in relation to most social care services for the person with dementia: 78% of those using the service paid for day centre care, 63% paid for other types of day care, 74% paid for home care and 92% paid something for meals provision. Payment was less common for memory cafés, but even here 46% reported paying something for attendance.
We asked those who reported paying something for the service both how many times they had used the service in the previous week and what they had paid each time they had used it. This information is analysed fully in Chapter 6, in which we explore the health economics aspects of our study. Here we simply report totals, when it is possible to calculate them, and analyse these alongside data on carers’ household financial situation.
indicates the substantial financial burden that some carers and people with dementia were bearing to buy, or contribute towards the cost of, services to support them. The wide range of costs per use – particularly in relation to respite, day and home care – is likely to reflect the fact that some people were paying the full cost of these services, whereas others were making means-tested contributions.
Range of cost per use, total cost and median cost in the previous 4 weeks when services were paid for
As indicated earlier, we asked whether it was the carer or the person with dementia, or both, who paid for the service. In this next section of analysis, in which we look at costs alongside household finances, we confine the analysis to the 256 respondents who lived in the same household as the person with dementia. First, we look at estimated gross annual income, for which 177 of these ‘same-household’ respondents provided information, and then at how people felt that they were ‘getting on’ financially, for which we had information from 232 respondents.
Over half (57%) of the carers who provided information reported an annual household income of ≤ £25,000; 23% had an annual household income of ≤ £15,000. At the other end of the income range, 14% of carers reported a household income of ≥ £40,000 per year. Over two-thirds of carers reported that they had some (34%) or severe (35%) financial difficulties.
It is not surprising, perhaps, to find that those with the lowest incomes were most likely to report severe financial difficulties; 75% of those with incomes of ≤ £15,000 reported severe problems, as did 56% of those with incomes between £15,001 and £19,999. At the other end of the income scale, 46% of those with incomes between £35,000 and £39,999 and 41% of those with incomes of ≥ £40,000 reported that they managed very or quite well. These differences were statistically significant (χ2 = 41.457, df = 12; p < 0.001).
One might have expected that household income and the costs of services would vary in a linear fashion, with those with the lowest incomes having the lowest costs (because they were accessing means-tested services and paying little) and those with the highest incomes having the highest costs (because they were paying the maximum towards means-tested services or choosing to buy in the private market). There was, in fact, little evidence of this relationship in those households in which the carer and the person with dementia lived together. Non-parametric testing of the costs of carers’ services, services for the person with dementia and all social care services showed little relationship to household income.
There was also no significant relationship between the costs of services and how carers reported that they were getting on financially. However, the median cost of both carers’ services and the total cost of social care services was higher for those reporting severe difficulties than for others (£3302 and £1742 per annum, respectively, compared with £988 and £1560 per annum for those reporting that they were managing quite or very well, and £2652 and £1248 per annum for those reporting that they were getting by or had some difficulties). These figures suggest that the high costs of respite, day-sitting and night-sitting services could be driving some of these differences.
Future testing of the relationships between the costs of services and the characteristics of the person with dementia and the carer is needed.
Conclusions
Overall, the total sample of carers was older and more heavily involved in caring activities than all carers of people with dementia. Furthermore, the AN carers were older and more heavily involved than carers in non-AN areas. Both the general and the specific differences are likely to reflect the routes through which respondents were recruited. Carers who have started attending carers’ groups and who are known to statutory and third-sector organisations are likely to be some way into the dementia caring journey, rather than at its beginning. Those known to AN services are likely to be even further into this journey and/or, as we see in Chapter 7, struggling with their caring responsibilities.
The other differences between the AN carers and non-AN area carers perhaps show something of the ‘natural history’ of caring for someone with dementia and the role that AN support might play in maintaining people in their own homes. Thus, the first port of call for support, when people are married or in long-term relationships, is the partner, who acts as the main carer. If younger family members or friends are available, they may act as joint or non-main carers. If the main carer becomes frail or ill themselves or dies, or for other reasons the person with dementia needs more support than the main carer can provide alone, the younger generation takes over as the main carer, and the partner moves into the joint or non-main carer role. Alternatively, AN services may step in to support older or more heavily involved carers to continue.
Carers who had used AN services recently were more likely to report receiving emotional and social support and receipt of information, advice and knowledge from that source than were carers who had recently accessed other types of services for carers. This may reflect the personal and targeted nature of the relationship that Admiral Nurses are able to develop with carers compared with that which is possible in, say, carers’ groups or advice services.
Given the heavy involvement of all our carers, in terms of their caring status and activity, their overall levels of use of, and practical support from, other health and social care services were surprisingly low. Moreover, those carers who were accessing services related to their caring activities were often paying large amounts of money to do so and, for some perhaps, with consequent financial difficulties.
As other work shows,20,21 and as participants in the stakeholder workshop pointed out (see Appendix 1), there is no single ‘silver bullet’ model of service that could possibly provide support for carers of people with dementia all the way from initial symptoms becoming evident, through the worsening of behaviour and physical health, to death. Carers’ needs across the dementia journey will vary substantially, both as symptoms and circumstances change and in relation to individual characteristics and the support networks they do or do not have around them. Our survey results show that AN services are supporting the very oldest and most burdened carers, many of whom may be very close to the end of that journey.
