people with dementia and their family carers' satisfaction with a memory service: a qualitative...
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People with dementia and their family carers’ satisfactionwith a memory service: A qualitative evaluation generatingquality indicators for dementia care
ROSALIND WILLIS1, JENI CHAN2, JOANNA MURRAY1,
DAVID MATTHEWS2, & SUBE BANERJEE1
1Institute of Psychiatry, King’s College London, and 2South London and Maudsley NHS Trust,
London, UK
AbstractBackground: UK health policy requires the early identification and management of dementia. Thereare few good quality evaluations of models of care in dementia with a particular lack of data from userand carer perspectives. The Croydon Memory Service Model (CMSM) was developed to identify andtreat people in the early stages of dementia and its evaluation includes an assessment of servicesatisfaction.Aim: To complete a qualitative investigation into the satisfaction with the service of those assessedand treated using the CMSM.Method: The CMSM was the subject of a multi-method evaluation, as part of this, semi-structuredqualitative interviews were carried out with 16 people with dementia and 15 family carers to establishtheir opinions of the service. Purposive sampling was used to identify participants with a range ofdiagnosis, ethnicity, and age. Conventional Content Analysis was used to analyse the data.Results: Six themes concerning satisfaction emerged from the data: initial experience of dementia;service experience; helpful interventions; normalizing the catastrophic; clear communication; and gapsin service. Peer support and clear communication were seen as valuable assets provided by the service,allowing participants to use coping strategies which normalized having dementia.Conclusions: From these data we can derive seven quality indicators with which to judge services forpeople with dementia: (i) provision of broad-based care as well as assessment; (ii) clear communicationabout diagnosis and care; (iii) continuing peer support groups; (iv) easy availability of staff;(v) professional staff behaviour; (vi) the service working for people with young-onset dementia andtheir carers; (vii) strategies to manage those with subjective memory impairment but no objectivedeficits.
Keywords: Dementia, service satisfaction, user and carer views, qualitative evaluation
Introduction
The demonstration of good quality care requires robust evaluation of its effectiveness and
investigation of consumer experience and satisfaction is an essential aspect of such service
Correspondence: Professor Sube Banerjee, MBBS MSc MD FRCPsych, PO 26, Section of Mental Health & Ageing, Health
Services Research Department, David Goldberg Centre, Institute of Psychiatry, King’s College London, De Crespigny Park,
London SE5 8AF, UK. Tel: þ44 (0)20 7848 0012. Fax: þ44 (0)20 7848 5056. E-mail: [email protected]
Journal of Mental Health,
February 2009; 18(1): 26–37
ISSN 0963-8237 print/ISSN 1360-0567 online � Shadowfax Publishing and Informa Healthcare USA, Inc.
DOI: 10.1080/09638230701529681
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evaluation (Coombes et al., 2004; Phipps & O’Brien, 2002; Simpson et al., 1995).
Consumers of dementia services include not only the people with dementia themselves, but
also their family carers. Traditionally, studies of dementia services have collected the views
of carers, assuming that people with dementia are unable to articulate their opinions
sufficiently clearly or accurately. UK health policy requires the early identification
and management of dementia and the active inclusion of people with dementia in the
decision-making process (Department of Health [DoH], 2001; National Institute for
Health and Clinical Excellence [NICE], 2006). However, there are few good quality
evaluations of models of care in dementia with a particular lack of data from user and carer
perspectives.
‘‘Memory clinics’’ have become established as a response to increased demand for
dementia assessment and care (Lindesay et al., 2002). While the term ‘‘memory clinic’’
does not refer to a single type of service model or delivery (Dukes, 2003) the common
aspects of these services are that: they are usually for people with mild to moderate
dementia; a thorough assessment is conducted; diagnoses are made; and pharmacological
treatment is usually initiated and monitored. Studies of consumer satisfaction with
memory clinics have generally been opportunistic rather than systematic, and have
usually concentrated on the referral, assessment and diagnosis stages, without examining
the care provided. Positive aspects of memory clinics reported include: positive attitude
of the staff (van Hout et al., 2001); short delay from referral to assessment
(Montgomery & Coles, 2003); the comprehensiveness of assessment (Hill et al.,
1995); and the provision of diagnostic information (Foreman et al., 2004). Much
research in this area has focussed on diagnosis-giving to clients (Carpenter & Dave,
2004), with reports that some services have a degree of reluctance to disclose the
diagnosis to the client for fear of a catastrophic depressive reaction (Keightley &
Mitchell, 2004), while patients and families report a clear desire to be told about any
diagnosis of dementia (Dautzenberg et al., 2003). Moniz-Cook et al. (2006) describe
clearly the considerable anxiety of those awaiting assessment and diagnosis. Memory
clinics have been criticized for providing poor support and advice for carers (Foreman
et al., 2004; Hill et al., 1995; van Hout et al., 2001) but much of these data are now
quite old and services may well have moved on; again there is a lack of good quality
up-to-date information in this area. In dementia care more generally, Bass et al. (2003)
has reported that where there is a lack of information on the illness given, then services
can leave patients and family feeling ‘‘abandoned’’. The baseline cognitive assessment
carried out at memory clinics has also been experienced as distressing (Montgomery &
Coles, 2003; Hill et al., 1995).
The importance of finding ways to enable people with dementia to participate
meaningfully in service evaluation has been recognized (Aggarwal et al., 2003; Moriarty,
1999; van Hout et al., 2001). Qualitative approaches have been suggested as a method for
enabling access to the views and experiences of people with dementia (Sperlinger &
McAuslane, 1994), and semi-structured interviews have been advocated as an alternative to
forced choice questionnaires which people with dementia may find anxiety-provoking
(Cheston et al., 2000). However, to date, few studies have used these techniques and our
review of the literature suggests that no study has used rigorous qualitative methods to
obtain information from both people with dementia and their family carers with respect to
service satisfaction. We therefore completed a qualitative study to ascertain the level of
satisfaction of clients and carers who had attended a specific memory service and the factors
which contribute to this.
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Methods
Setting
The setting for this evaluation was the Croydon Memory Service (CMS). The Croydon
Memory Service Model (CMSM) is designed to provide early identification and care for
people of any age with mild to moderate dementia and their family carers. Data on
service composition and outcomes are presented in detail elsewhere (Banerjee et al.,
2007). However to summarize: the team is multidisciplinary comprising staff with
backgrounds in nursing, psychiatry, social care and psychology. A generic team approach
enables staff from any discipline to conduct initial assessment and take the keyworker
role. The team forms the diagnosis and management plan jointly. The interventions
offered include: systematic feedback of diagnosis to both clients and carers; individual
and group psychological therapies (memory retraining for clients and carers together,
and a support group for carers only); anti-dementia medication; other pharmaco-
logical and psycho-social management of behavioural and psychological symptoms of
dementia. Access to social services support (e.g., day care, respite care, home care) and
advice on benefits are arranged by the team, as is contact with voluntary agencies.
Because the team is integrated with social services there is no need for referral for
further assessment so that packages of care can be provided. The keyworker role involves
case management (regardless of background discipline) and lasts as long as needed.
Croydon is a borough in south London with a mixture of affluent areas in the south
and inner-city areas in the north. The CMS is commissioned jointly by Croydon
Primary Care Trust and Croydon Social Services and it is an integrated service
incorporating the local mental health trust, local social services and the local Alzheimer’s
Society branch. Referrals to the service come from primary care, secondary care and
social services.
Participants
The interviews took place between March and August 2004. A purposive sampling
strategy was adopted to sample across the diversity of referrals. The preliminary analysis of
the first group of interviews revealed factors not yet covered, e.g., demographic
characteristics, a mix of positive and negative opinions of the service, and certain
diagnoses. Successive recruitment rounds followed the same procedure. Recruitment
ceased at theoretical saturation (i.e., at the point where no new themes were emerging
from the interviews). Ethical approval was obtained from the local research ethics
committee.
Interviews
A set of open-ended questions, and one closed question, was drawn up after reviewing the
literature and in consultation with the research steering group. An interview schedule was
compiled from these, covering the topics of: pathways to care, expectations of care,
experience with the service, and evaluation of the service. The interview schedule was
piloted and then refined iteratively as fieldwork progressed. The interviews were conducted
by two research workers (RW, JC) at a time and place convenient for the participant. The
research workers were independent of the CMS; when they met participants this was
reinforced as was the fact that the interviews were confidential to encourage participants to
share their views frankly. Where possible, the interviewers worked together to conduct a pair
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of client and carer interviews simultaneously in separate rooms. The interviews were tape
recorded and lasted between 20 minutes and 1 hour, depending on the depth of detail
participants gave.
Analysis
The interviews were transcribed verbatim. The accuracy of the transcripts was checked
and any potentially identifying information was made anonymous. The NVivo 2
qualitative data handling software package was used to aid storage and coding of the
data (QSR, 2002). The interviews were analysed using Conventional Content Analysis
(Hsieh & Shannon, 2005). This uses open coding, where the codes are derived from the
text itself, and the themes found in this way are clustered into groups of similar meaning
and counted. This analysis does not attempt to create a theory from the data, as
Grounded Theory (Strauss & Corbin, 1990) might, but rather describes the content of
interviews. One researcher (RW) repeatedly read the first five transcripts and created
detailed open codes arising from the themes found in the data. Cross-coding was
conducted by another member of research staff (JM) to enhance the validity of the coding.
A preliminary coding strategy was then developed, organising the themes into hierarchies
of related meaning. Two researchers (RW, JC) then coded the remaining 26 transcripts,
discussing the most appropriate code for each chunk of text, creating new codes and
revising existing codes where pertinent. Any discrepancies were discussed until a final
decision was made.
Results
Demographics
To generate the sample, 40 people were approached for interview by purposive sampling, 16
clients and 15 carers consented and were interviewed. There were 12 client-carer dyads
(nine spouse pairs and three parent and child pairs). See Table I for a summary of their
relationships.
Two of the participants were Black Caribbean, one was South Asian, and 28 were White
European. The characteristics of the clients are shown in Table II; the mean Mini Mental
State Examination (Folstein et al., 1975) score was 25 (SD 4; minimum 15, maximum 30).
The carers were four men and 11 women. Eight of the carers were under the age of 65. All of
the carers were cognitively well.
Table I. Relationships between client and carers.
Client Carer N
Parent Child 3 pairs
Spouse Spouse 9 pairs
Spouse Carer not interviewed 2 individuals
Child Carer not interviewed 1 individual
Client not interviewed Spouse 1 individual
Client not interviewed Child 2 individuals
Client No carer 1 individual
Total 31
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Content analysis
The six themes identified by content analysis were:
(1) The initial experience of dementia
(2) Service experience
(3) Helpful interventions
(4) Normalizing the catastrophic
(5) Clear communication
(6) Gaps in service.
(1) The initial experience of dementia
Participants were asked about their initial experiences of the illness, and how they reacted to
these. They described various symptoms of dementia: lack of concentration, memory loss,
false beliefs, getting lost, losing objects, and confusion. The reactions of both clients and
carers to these problems were invariably negative: distress, frustration, anger, and
arguments. Some of the most powerful descriptions of these feelings were from the people
with dementia themselves.
I look at myself and I wonder ‘Is this really you?’ You know, this is very, very
disheartening. Each time I think about it I am near to tears. (Client 7)
He looked at me so sadly and said to me ‘You don’t think I like being like this, do you?’
(Carer 3)
At this point in their illness, participants sought help from their GP and were referred to
CMS.
(2) Service experience
Clients and carers were asked directly if they were pleased with the care provided by
CMS. The question was: ‘‘How would you rate the memory service out of the following
Table II. Characteristics of the 16 clients.
Characteristics n
Gender
Female 7
Male 9
Age group
Under 65 4
Over 65 12
Diagnosis
Alzheimer’s Disease 6
Mixed dementia 4
Vascular dementia 1
Other 2
No dementia 3
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options: very good, good, fair, or poor?’’ All of the responses were either ‘‘good’’ or
‘‘very good’’. Even so, some criticisms of the service and recommendations for improvement
were given. Although there was no direct question asked about this issue, 22 people made
60 spontaneous positive comments on the manner of CMS staff, describing them as caring,
thoughtful, professional, not patronizing, and able to put nervous clients and carers at their
ease. The overwhelming message was that staff behaved in a manner toward both clients and
carers which they found acceptable, which they appreciated, and with which they were
comfortable.
The personalities are great, they are all in the right job, you know, the right pegs in the
right holes. (Carer 11)
It was concern, you know, it was thoughtfulness. You don’t come across that much in life,
but certainly they have been fantastic. (Client 13)
Three of the 31 people interviewed made negative comments about the staff. These
included the perception that staff had seemed nervous while conducting the initial
assessment, had been patronizing to the client, and had seemed insensitive to the client’s
needs.
Thirteen people raised negative points about the assessment process. Three carers and
two clients said that the experience had made individual clients feel stressed, anxious,
agitated, and uncomfortable.
I know my mum was very worried and stressed out about them coming because she
tends to worry about giving a wrong answer and instead of, when she has been
asked her opinion, give it, she is more worried about sort of saying the wrong thing.
(Carer 6)
There were two distinct aspects to this distress: the experience of being tested was
anxiety-provoking as was a specific worry about answering incorrectly on the memory
tests. It was suggested that this stress would impair performance. Others, however,
praised staff for their ability to put nervous clients at their ease during the assessment
process.
(3) Helpful interventions
Both the psychological therapies and the pharmacological therapies were valued by clients
and carers.
I wouldn’t like to lose that [medication]. I’m sure that’s my life line. (Client 3)
The course itself - utterly brilliant. Really good. (Carer 8)
Eight of the people interviewed attended the memory retraining group, and all were
positive about it. Clients learned adaptive strategies to enable them to function more
easily in their daily lives. It was also praised for giving good explanations of how memory
worked. The two participants who had attended the carers group said that it helped to
address the emotional aspects of the caring role, and was a useful source of information
about dementia.
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(4) Normalizing the catastrophic
In addition to the therapeutic benefits gained from attending the group therapies, they
also fulfilled a peer-support function, which was a very important aspect in helping
clients and carers come to terms with dementia and was reported by seven carers and
four clients. Day centres also fulfilled the peer-support function for clients, with access to
them arranged by the team. Meeting others in similar situations (i.e., other carers and
other people with dementia), in many cases for the first time, subtly altered the
experience from a catastrophic change in life and health to an experience which is shared
by others. This made having dementia seem more ‘‘normal’’. The benefits took different
forms. One was simply gaining the knowledge that other people were experiencing the
same things.
It did help me because we spoke to other people with similar problems and you learn that
you are not alone. (Carer 8)
Going to the day centre and so on and it was quite helpful you know and it made me feel
better that there were other people and you know it was nice to be with other people and
not to feel the pressure as you do sometimes with normal people [laughs] you know so on
the whole it was very good. (Client 8)
Another benefit was comparing one’s own situation with someone who had a
different form of illness (eg cancer), or more severe symptoms of dementia.
So, it was possible to assess one’s own experiences in the context of a continuum of
severity.
When I see what some of the other people were doing I think, ‘Oh well, I’m not too bad
really’. (Client 10)
Although seeing people in more advanced stages of dementia might have been expected to
worry people about what would eventually happen to themselves or their relatives, only one
person mentioned this.
One gentleman that comes [to the group], he has to dress and wash, see to his wife
completely, so, you know, he has a lot more to do than, than myself . . . but it makes you
realise just what might happen. (Carer 10)
However, this ‘‘normalizing’’ effect may have been specific to the group therapy
and day centre settings. Two clients mentioned how, even though they felt
better when with a group of similar people, it did not extend to interactions in the
‘‘real world’’. Furthermore, the peer support system was of limited duration. The
group therapies ran for six weeks and then ceased. Members were encouraged
to meet up informally afterwards, but this was found too logistically difficult, and
participants said they would have preferred structured group meetings arranged by CMS
to continue.
Going to a meeting like that that’s arranged, is a different matter, isn’t it? But
to meet in one another’s homes, I don’t think that would be, be good at all.
(Carer 10)
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(5) Clear communication
Clear communication at all stages of involvement with CMS was highly valued. Participants
appreciated knowing the diagnosis and prognosis, the causes, and what was available to help
them, and felt they had a good understanding of these. Although the initial diagnosis was
experienced as shocking in three cases, carers were pleased that they were given a full
explanation of what was happening to their family member.
It was very important to find out what was wrong. (Carer 1)
Overall do you think the Memory Service has done anything to help [your relative]?
Yes.
In what sense?
Yes . . . because I think . . . confirming the . . . diagnosis . . . is the first thing, because ’till
you know what you’re treating then you know you’re shooting in the dark. (Carer 15)
Clients felt they understood what the team were doing and why, and they were pleased with
what was being done. They also appreciated an explanation for the problems they were
experiencing.
It helps everybody, anybody who’s involved to understand the problem or ways round it.
At the same time, it also points out to you . . . that, you know, there is no magic cure.
(Client 9)
So what was it like to be told about that diagnosis?
For me or for [client’s name]?
For both of you.
I suppose he was relieved that there was some reason. (Carer 8)
Six carers and two clients had suspected in advance what the diagnosis might be. These people
had known someone with dementia previously, had known someone who worked in the
medical field, or had some medical knowledge themselves. A key aspect of being able to rely
on the service was a belief that staff will be available to answer queries, and be willing and able
to help. Ten people reported feeling comfortable with the idea of calling CMS for help and
advice. An important factor in this is the knowledge that there will be someone on the other
end of the phone who is familiar with the case. Fifteen people described how their keyworker
contacted them on a regular basis to ensure that all was well. A further contributor to the
approachability of CMS was the feeling that they would be supportive of clients and carers.
Twelve people mentioned how supportive the memory service had been to them. They were
described as a ‘‘back-up’’, ‘‘somebody to turn to’’, and as taking ‘‘some of the burden’’.
I would have felt much more out on a limb and on my own without them. (Carer 3)
It’s one of the pillars you can lean on if it gets to the stage where you need to, you know, you’ve
always got a chance of ringing them, you’ve got a voice at the other end that you know
and who’s in a situation where they understand and that makes a big difference. (Carer 11)
(6) Gaps in service
Services not need-specific: The carer of a person with early-onset dementia would have
preferred services to be more tailored to the needs of younger people instead of being offered
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care alongside elderly people. It seemed that day centres offered only limited activities and
these were not specific to the hobbies and interests of the clients. In two other cases, it was
mentioned that the clients could do the same activities at home so there was little point in
attending the day centre.
What was he doing, cutting out a few shapes or crayoning in a few pictures or whatever,
I mean he can do that here without paying . . . for it. (Carer 3)
Not enough for those without dementia: Five of the clients interviewed were found after
assessment not to have dementia despite subjective memory impairment, and were
discharged. Three of these had negative recollections of this experience and found it
unhelpful or disappointing.
I did think that there might have been a bit more, I don’t know, help, treatment, to try and
reverse it, work at it, to make it better, but it didn’t happen . . . the end result I was
expecting something different. (Client 5)
Discussion
Using qualitative methodology we have identified factors in this new model of dementia
care that are perceived as having a positive and a negative impact on service satisfaction
from the viewpoint of people with dementia and their family carers. However there are
important limitations to this study which need to be considered. Most importantly this is a
study of the clients of a single service so the eligibility criteria for the service and the
service received will affect the generalizability of the data and the themes generated. Also
while it was the case that interviews were continued to the point of data saturation the
numbers in specific diagnostic categories and ethnic groups were small. The findings
reported here therefore can only refer to the group of people with dementia as a whole
rather than to subgroups.
Consumer satisfaction
Although specific criticisms were made, overall consumer satisfaction with the team was
high, with all ratings ‘‘good’’ or ‘‘very good’’. This high level of overall satisfaction is similar
to that reported for inpatient dementia care (Simpson et al., 1995) and old age community
mental health services in general (Melzer et al., 1996).
The distress some clients experienced while undergoing the cognitive assessment has been
reported before (Hill et al., 1995; Montgomery & Coles, 2003), as has the suggestion that
assessment can be compromised by client anxiety (Fogarty, 2001). Dementia services
therefore need to set up systems to put people at their ease, addressing predictable anxiety
about the assessment. A number of participants commented positively on CMS’s efforts in
this area.
Normalizing the catastrophic
The CMS policy of providing group therapy and facilitating other group oriented activities,
such as day centres, created a peer support network, which was very important to clients and
carers. Spending time with other people in similar situations helped to normalize the
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experience of dementia. This raises the issue of whether the social aspect (peer support) of
the groups is more important than the psychological content (strategies for coping). Hazell
and Punshon (2003) describing a ‘‘memory group’’ for clients and carers in Wolverhampton
suggested that the most important aspect of the groups for attendees was meeting other
people in a similar situation, even though the group was set up to deliver specific
psychological interventions. However there is also evidence for psychological content being
of specific value (Lo Giudice et al., 1999). Our data suggest that services need to be able to
deliver (directly or indirectly) ongoing peer support as well as specific psychological
interventions. The value placed upon the group therapies by participants was emphasized by
their requests for further meetings once the structured interventions had ceased. Where
specific psychological interventions are time-limited (as is usual) this will require the
establishment of, or transfer to, ongoing peer support groups which may well have a
therapeutic element.
Clear communication
Information given by the team on diagnosis, treatments, and services available were very
important to clients and carers and contributed to their satisfaction with the service. The
CMSM contains a major focus on effective diagnosis sharing and ongoing case
management with a specified keyworker. This aspect of care is possibly more successful
in CMS than has been reported by studies of other memory clinics (Foreman et al.,
2004; van Hout et al., 2001), and in other services for dementia (Bass et al., 2003).
Revealing the diagnosis to clients as well as carers in a managed pre-agreed manner
seemed to be beneficial in the long run, although acknowledging the diagnosis was
distressing. Although clients and carers gained considerable emotional support from
meeting their peers, the emotional support provided by staff was also highly valued, as
has been reported previously (Coombes et al., 2004). The perceived approachability and
availability of the staff enabled clients and carers to feel they were in the care of a
helpful, interested, and supportive service, which they could contact when they needed
help or advice.
Gaps in service
The concern that services designed for older people with dementia may not be appropriate
for younger clients is supported by the literature (Shlosberg et al., 2004). This suggests that
either separate provision is required to meet the particular needs of younger people with
dementia and their carers (Beattie et al., 2004), or that services that are not age-specific
make sure that the particular needs of people with young-onset dementia are catered for. A
separate point was made about the limited activities offered by day centres, supporting the
case for the individual-tailoring of day care for people with dementia (Cole & McChesney,
2005; Cole & Nicholls, 1999; Train et al., 2005).
Three people who had subjective memory loss but no objective impairment and who were
discharged were disappointed that they had received no help with their memory. The goal of
the service is the early diagnosis and treatment of people with dementia. Some of those
referred have amnestic Mild Cognitive Impairment and are monitored, but others with
subjective memory impairment do not meet these criteria. In this study, some in the latter
group still felt the need for treatment and there is a need to evaluate what help besides
reassurance they require. For services to be perceived as of value then it is particularly
important to attend to the discharge process.
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Conclusions and recommendations
Qualitative methodology does not allow definitive generalization, but the emergent
themes reported here are consistent with and add usefully to the dementia care literature.
Although the data presented come from a single service, the needs expressed should have a
wider value in terms of service development and quality assurance. Our findings confirm
that qualitative methods can be used to evaluate satisfaction with dementia services. From
these data we can derive seven quality indicators with which to judge services for people with
dementia:
(1) Provision of broad-based care and treatment as well as assessment.
(2) Clear communication given to people with dementia and their family carers about
their diagnosis and the care to be provided.
(3) Provision or facilitation of structured continuing peer support groups when time
limited psychological assessments or interventions are completed.
(4) Easy availability of staff to carers and clients to answer questions and address issues
when they arise.
(5) Considerate, professional staff behaviour.
(6) Where dementia services are provided across the age range, they should construct
themselves to be acceptable and to meet the needs of people with young-onset
dementia and their carers as well as those with dementia in old age. Specific groups
may need to be convened for these people.
(7) Services that are designed to treat people with dementia need to develop strategies to
manage those with subjective memory impairment but no objective deficits.
Declaration of interest: The authors report no conflicts of interest. The authors alone are
responsible for the content and writing of the paper.
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