Participant characteristics
Most of the participants were older females. The mean (SD) age of male (
n = 8) and female participants (
n = 10) with dementia was 77.4 (10.1) years (Range: 54-97 years). Most of the participants lived either with their spouse (n = 10) or a close family member (e.g. daughter, niece) (
n = 4). Care partners mean (SD) age was 67.3 (15.4) years (Range: 30-88 years). All PwD were in the mild-moderate stage of dementia, with at least 3 years duration of clinical symptoms, and required some support with activities of daily living. The specific type of dementia was not reported in nine PwD as access to clinical records was not always available. Of the remaining PwD, four had an Alzheimer’s dementia (AD), two had mild cognitive impairment (MCI) of the amnestic type, two had vascular dementia (VaD) and one person had a mixed type of Alzheimer’s dementia as well as a vascular dementia (AD+VaD). The presence of hearing and vision impairment was based on self-report, and all participants had one or both impairments severe enough to interfere with daily functional ability. A summary of participants’ demographic characteristics is provided in Table
1.
Table 1Demographic characteristics of people with dementia and their care partners
MANCHESTER | AP01 | NR | H + V | S01 | Spouse | FG |
(MAN) | AP02 | NR | H | S02 | Spouse | FG |
| AP03 | NR | V | S03 | Spouse | FG |
| AP04 | NR | H | S04 | Spouse | FG |
| AP05 | NR | H | – | – | FG |
| AP06 | NR | H | S06 | Spouse | FG |
| AP07 | NR | H | S07 | Spouse | FG |
| AP08 | NR | H | – | – | FG |
BORDEAUX | BP01 | NR | H + V | SB01 | Daughter | SSI |
(BDX) | BP02 | AD | H | SB02 | Spouse | SSI |
NICOSIA | NP01 | VaD | H + V | SN01 | Daughter | SSI |
(NIC) | NP02 | MCI | V | SN02 | Spouse | FG |
| NP03 | VD | H + V | SN03 | Spouse | FG |
| NP04 | AD | V | SN04 | Spouse | FG |
| NP05 | MCI | H | – | – | FG |
| NP06 | AD | NR | SN06 | Caregiver | FG |
| NP07 | AD+VaD | V | SN07 | Daughter | SSI |
| NP08 | AD | H + V | SN08 | Niece | SSI |
The following results reflect the findings from the FGs and SSIs regarding the clinical assessment process in all three domains, the PwD and the care partners’ knowledge and understanding of their condition, as well as their perceptions and understanding of any sensory support aides (i.e. hearing aids, glasses) they may have been using. The findings support clinical and care recommendations. The qualitative material revealed the following themes: (1) hearing, vision and cognitive assessments were not appropriate to the complex needs of PwD and sensory comorbidity; (2) challenges in communication and conveying unmet needs and concerns by PwD towards care partners and professionals were common in the different domains; and (3) that information about and guidance regarding support for the condition was not adequate in the assessments.
Clinical assessments for hearing, vision and cognitive impairment are not ‘fit-for-purpose’
A key aspect that emerged from the interviews was that PwD acknowledged that they had received information (verbal or written) regarding the process and outcome of their clinical assessments in the different domains, but, in spite of this, they acknowledged that they were still
unable to explain the nature or impact of their impairments, as well as the clinical recommendations made by the professionals. The option of home-based assessments, generally considered to be a helpful service for older people, was met with conflicting responses. Some PwD felt that
home-based assessments were an invasion of their privacy, and that the assessment, particularly if equipment is required, might not be as thorough as when performed in a dedicated clinic space.
AP01: I’d prefer to go to the opticians because they’ve got more technical equipment there to test your eyes, because I have bad eyes and I wouldn’t want somebody to come to the house and do it, I’d rather go there and get through that whole procedure. (FG MAN PwD:32–38)
Several PwD expressed that they felt highly vulnerable with an unknown person seeing them in their own home. Some reported that they had been victims of ‘door step’ scams and fraud in the recent past. Thus, trust and security issues were of paramount importance and appeared to be a key factor in influencing the views of PwD regarding home visits. This issue is particularly important for older people with cognitive and sensory deficits; their ability to easily appraise and interpret an unknown person’s motives may be more limited compare to cognitively healthy older people with intact sensory functioning. Throughout the interviews, a repeated theme, raised by all participants, was the importance of knowing their clinicians well, and having the same clinician in subsequent visits.
They disliked working with new clinicians or having to discuss their concerns with new professionals at each assessment or visit.
R: Do you think that your optician understands that?
AP03: Well you don’t see the same one each time, it’s a different one every time you go. It’s a it’s like um, it’s not that one, no, I can’t think what it’s called. It’s probably in that letter in me pocket.
R: So would you, do you think you would find it more useful or helpful if it was the same person each time?
AP03: Errr well yeah but you, it’s only once every 2 years so you forget who you going to anyway within 2 years wouldn’t you?
(FG MAN PwD:83–87)
The practical and operational aspects of clinical appointments was another issue raised by both PwD and care partners. PwD admitted that they often could not remember to keep their appointments and reported that few clinics or services had robust appointment reminding systems in place. This creates challenges as people living with multimorbidity often must attend many different clinical appointments in different locations. Thus, a practical, easy-to-use reminder system could significantly enhance the clinical assessment process for PwD and sensory impairment. Furthermore, confining all sensory and cognitive assessments to the same place, and, if possible, date, would enhance attendance, lessen anxiety and increase the utility of the assessments for all stakeholders.
Another issue raised by PwD and care partners was that they felt that professionals’ clinical interests and expertise were limited to single systems and thus, what the participants perceived as their complex and inter-linking problems were incompletely addressed. For example, by focussing exclusively on cognitive impairment, the impact of hearing and vision impairment on an individual’s ability to perceive and make sense of his world, is not considered. Some felt their cognitive problems were being used as an excuse by professionals to neglect addressing their hearing and vision problems more thoroughly. This view was supported by the fact that for some PwD, once cognitive enhancing medication was prescribed and a diagnosis of dementia given, further assessments for non-urgent health concerns were neglected, notably hearing and vision assessments.
Care partners further reported their relatives might experience physical and psychological distress during assessments due to lack of understanding, and that this might impact negatively on the outcomes or findings of the assessment.
They have also reported that the assessment outcomes may lead to distress, anxiety or upset in the PwD, particularly if diminished insight or inability to recognise their impairments was present.
SB02: De vision, oui, il refuse [Regarding vision, yes, he refused]. On lui a fait des ordonnances [We wrote him prescriptions], il les met à la poubelle [that he put in the garbage].Et puis l’audition [And for the hearing], il entend très bien [he hears very well], même si ce n’est. pas vrai [even if it’s not true].
(SSI BDX CG:2–2)
Thus, there is a strong risk that the clinical assessment process in any of the three domains may be misunderstood by PwD. Once again, this underscores the need for professionals to clearly explain the purpose of the assessment, the procedure to be undertaken and to appropriately manage expectations. On the positive side, care partners reported that if another support professional, such as an occupational therapist, was involved in the assessment process and was able to address psychological issues and support uptake of newly prescribed devices, such as hearing aids, outcomes for PwD were more positive and adherence to interventions and acceptance of the diagnosis was enhanced.
Challenges in communication and information sharing in hearing, vision and cognitive assessments
The theme of ‘
challenges in communication in clinical settings’ was raised by several participants at several different points in the interviews. They reported having
difficulties making their specific unmet needs and concerns fully understood by the professionals involved in their care, particularly in relation to sensory-cognitive health. PwD reported that their own care partners, as well as the professionals in the different clinical domains, did not take the time to hear their concerns fully. Thus, there was a risk that misunderstandings regarding needs, concerns and clinical complaints might arise.
AP07: […] It [my condition] has taught me to listen to people. If they’re talking to me, you know, really listen to what they say, which I think some, some, I don’t say generalised but some people don’t listen to what you say to them. So if I want to know I’ve got to listen.
(FG MAN PwD:187–191)
PwD also reported that
they did not feel comfortable asking for more information or further clarification. Furthermore, they were unable to report on the details of what had taken place in the assessments in any of the domains, particularly the memory clinic assessments. This suggests that the means of conveying information in clinical assessments is not ‘fit-for-purpose’ and alternative means are necessary. The following quote illustrates that the assessment was indeed correctly undertaken by the professionals, but the PwD did not feel confident enough to ask for further information. It is possible that patients, particularly those of an older generation and/or having less confidence due to sensory-cognitive impairment, may not feel empowered enough to raise queries in what they perceive as a hierarchical physician-patient consultation.
R: Do you believe that the assessments provided you with all the necessary information?
NP08: Yes yes
R: If you had any questions
NP08: No, he didn’t even ask me he just examined my eyes …
R:. You... if you...
NP08: I am not asking … I don’t.
(SSI NIC PwD:192-198)
Some care partners suggested that professionals were more prone to providing a practical solution such as a prescription for medication rather than focussing on the individual challenges or patient’s expressed needs. This may, in part, be prompted by the specific methods of medical remuneration in some health systems, such as in Cyprus, as illustrated by the following two quotes:
NP08: […] I mean we have these problems we can help in these ways let’s say. They write you a pill/prescription they say go away and don’t come, she didn’t hear this just once, she heard it many times from an orthopaedic, ophthalmologist and from […] (FG NIC CG:187–201)
R: So you believe that these results let’s say could have been presented in a more meaningful way.
NP08: Yes, it’d have been better if the doctor put some effort to approach the patient.
R: Hmm. Do you think that you had all the information that you needed through these assessments?
NP08: They were explaining only when I was asking […]. In the private sector, yes, I had all the information […] (SSI NIC CG:187–201)
Several PwD also reported that consultation and clinical
assessment time is often too short, and verbal explanations of procedures are not given in a clear and stepwise manner, assuming to much prior knowledge or understanding. In some cases, clinicians resorted to the use of jargon, further obscuring the ability of the patients to fully grasp the procedures being undertaken. This concern extended to challenges regarding the explanations about the use and maintenance of new sensory devices, particularly hearing aids, which may be introduced during or immediately following the assessment procedure.
AP02: Nobody has ever told me how to clean the plastic in these wee things [referring to hearing aids]. You know what I do? I take that off there and I hang it in an egg cup of warm water.
And then I clean them out with a pin which I don’t presume does the plastic very much good, but it does keep them clear for me. (FG MAN PwD:58–59)
None of the PwD and their care partners were able to offer a solution to this challenge. Thus, professionals should take time to carefully discussion outcomes of the assessments and the clinical recommendations, particularly involving new procedures that patients may have to adopt.
Assessments do not provide adequate information and explanations for care partners
The care partners from different sites reported that the
assessment did not contribute to improving their understanding nor their ability to understand or cope with the manifestations of conditions in the PwD. Furthermore,
additional health information was not routinely offered by the professionals in the different domains. Thus, care partners reported that they had to source further information regarding the cognitive and sensory conditions themselves. This is illustrated in the two quotes below:
R: so there wasn’t much of an explanation?
SN02: [...] yes more explanatory, this might have happened because there are different doctors and they are very busy …
R: neither for how to take care...
SN02: They have to inform us more
R: […] yes and to tell you and how to take care maybe...
All: Yes yes (in chorus)
R: about the changes, nobody told you.
SN02: They expect to learn from us.
(FG NIC CG:1088–1096)
S01: Well, we remember doing the test and at the end she said you got 27/35 or something.
R: So there’s no kind of meaning?
S01: No.
R: Just a score.
S01: I know what she got wrong, […] I know she can’t do it, she can’t. But I mean that’s it, I got nothing, I got nothing else. Just a score.
S04: The score, the score anyway can’t be meaningful, cos everyone’s different. S07: So it can’t be meaningful. (FG MAN CG:136–143)
This demonstrates that test results may need to be explained more comprehensively and appropriately contextualised in clear lay terms for both the PwD and their care partner.
It should also be noted that the experience of obtaining adequate information and explanations appeared to differ somewhat across the three health systems represented in the study (United Kingdom, France and Cyprus). Furthermore, in privatised systems, such as in Cyprus, in which patients pay for each consultation, there may be additional challenges in obtaining the necessary access to multidisciplinary care and health information [
57]. In contrast, in socialised medical systems, such as in the United Kingdom, access to different professionals representing the different domains was more possible but tended to be fragmented and located in different health care organisations.