The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses

By inergency On Feb 16, 2024

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Nine participants were family caregivers, and one was a person living with a rare dementia. Seven of the participants were female and three were male, including the person living with dementia. The ages of the participants ranged from 42 to 85, with a mean of 62 and a median of 72. The person living with dementia had a diagnosis of semantic dementia, a variant of frontotemporal dementia. Their capacity to consent was assessed as dictated by the Mental Capacity Act 2005 [36] by the lead researcher, a registered nurse in mental health. Participants shared experiences relating to the diagnosis of frontotemporal dementia (6), primary progressive aphasia (3), and posterior cortical atrophy (1). All participants were White British.

The thematic analysis revealed two distinct experiential themes concerning how the person felt involved in the diagnostic process and their experience of disputes between stakeholders. These occurred alongside five transitional points across the diagnostic pathways of people living with rare dementia:

3.1. Involved in the Diagnostic Process

Caregivers often felt excluded from the diagnostic process and the sharing of the diagnosis. One caregiver was excluded from the diagnosis meeting despite her husband’s limited retention and understanding of the meeting:

‘I can’t understand when you go into a consultant, and you’ve got someone who’s got memory problems and speech problems, and yet the partner, the wife, isn’t allowed’. (Participant 1)

This exclusion was felt when the diagnosis was impersonally delivered, through a letter rather than a conversation. Other participants were less concerned about their involvement in the process, regarding themselves as an object to be examined rather than an active participant:

‘I turned up, I submitted myself to whatever they wanted to do. From an engineering point of view, I wasn’t part of the plan’. (Participant 2)

The sense of being uninvolved was also related to caregivers having to ‘fight’ and ‘chase’ clinicians for appointments and referrals. This was not regarded as positive involvement in the pathway to diagnosis but a necessary action to ensure that the diagnosis continued to move forward:

‘I’m always double-checking things now, if a referral has been made. And I’m ringing up and chasing’. (Participant 1)

Participants also raised larger concerns about what happened to people who lacked the ability to ‘chase’ and fight’:

‘Those who do not push hard enough will just drop into an abyss’. (Participant 4)

Whilst all participants felt that their inclusion in the diagnostic process was not automatically assumed by services, there were differing opinions on whether their involvement was integral or inconsequential to the progression of the pathway.

3.2. Disputes between Stakeholders

Several caregivers described disputes between themselves and the person living with rare dementia. These were often caused by a lack of insight into behavioural and cognitive changes, resulting in a refusal to seek help:

‘My wife wouldn’t co-operate. She wasn’t being bolshy or difficult, but she could not see why we wanted her to see a doctor’. (Participant 7)

Some participants felt that GPs were unsure about who they should refer to, with services disputing that the referral was appropriate:

‘But then, he rang back and said that he’d contacted the memory clinic and the memory clinic, had said that he is too young, to be referred to somewhere like that’. (Participant 1)

Disputes led to extra costs, as participant 1′s difficulties in securing services led to a personal outlay of £895 for private consultations. Caregivers also felt that they were expected to align with the service provider’s expectations rather than the service adapting to meet the needs of the person. One person’s assessment was delayed due to the service only offering clinic-based appointments. The caregiver described their husband’s refusal to leave the house, as part of his symptoms, but still be expected to attend the clinic:

‘They wouldn’t come here to us. We have, and I have pleaded with them, look I can’t get him out and they’ve, no, he’s got to go, you’ve got to get him there’. (Participant 6)

The emotional impact of dealing with an unhelpful service alongside her husband’s symptoms also resulted in participant 6 relying on private healthcare to expedite the diagnostic process. The caregiver found that after being informed that a psychiatry appointment by a referring psychologist was urgent, they had been placed at the bottom of the waiting list:

‘The psychologist had said I’m going to pass him over as an urgent patient. And I heard nothing and when I rang to speak to the secretary to find out where he was on the list, they said, oh, the doctor said it’s not an emergency’. (Participant 6)

Whilst some participants felt that a formal diagnosis of dementia provided some relief, as they now understood what was happening, others continued to experience disputes between clinicians regarding the accuracy of the diagnosis. These disputes prevented some participants from accessing care services and elongated the emotional cost of the diagnostic pathway.

Table 1 and Table 2 provide a breakdown of the initial contact costs and initial referral costs, respectively. Initial contact costs for nine participants were funded by the NHS (healthcare system in the United Kingdom), and one participant reported an initial referral that was privately funded by the patient/family (Table 1). Initial contact was typically with a GP, with exceptions noted in Table 1. The least costly consultation was a GP appointment (£39.23), whereas the highest costing consultation was a privately funded consultant neurologist appointment valued at £250 (Table 1). For the ten participants, the total cost for the initial contact was £811 (£561 for NHS costs) when excluding travel and opportunity costs. When opportunity costs for patient consultation time, travel time, and mileage costs were considered, the total cost for initial contact was £911 (Table 1). Only one participant (participant 3) reported the length of time that they attended the initial contact appointment (480 min, Table 1) and this was acknowledged as an outlier in the data. For the other initial contacts reported by participants, a 9.22-min consultation time was assumed for GP appointments, and a 60-min consultation time for all other contacts was based on the consultation duration information provided in the published unit costs (Appendix B). When excluding this outlier of 480 min reported by participant 3, the total cost for initial contact (including opportunity costs) would be £839.72. There was more diversity in initial referrals, with some people referred for scans whilst others went directly to assessing clinicians (Table 2). All the initial referral contacts for the ten participants were funded by the NHS (Table 2). Consultation with the community mental health nurse was the least costly initial referral (£44), and a memory clinic appointment had the highest cost (£528).

2.: Initial referral

Table 2.
Initial referral costs.

Participant	Initial Referral (NHS/Private)	Health Service Activity	Unit Cost	Consultation Time (Minutes)	Travel Time (Minutes)	Opportunity Costs—Patient Consultation Time (£)	Opportunity Costs—Patient Travel Time (£)	Patient Funded Costs—Mileage (£0.45 per Mile)	Total Costs (£)
Participant 1	NHS	CT scan	£70.00	60	20	£8.91	£2.97	**	£82
Participant 2	NHS	MRI scan	£110.00	60	**	£8.91	**	**	£119
Participant 3	NHS	Ophthalmology follow-up appointment	£139.23	240 ***	30	£35.64	£4.46	**	£179
Participant 4	NHS	Community mental health nurse contact	£44.00	60	**	£8.91	**	**	£53
Participant 5	NHS	CT scan	£70.00	60	**	£8.91	**	**	£79
Participant 6	NHS	Community mental health nurse contact	£44.00	60	**	£8.91	**	£1.35	£54
Participant 7	NHS	Well woman appointment	£44.00	60	**	£8.91	**	**	£53
Participant 8	NHS	Memory clinic appointment	£528.00	60	**	£8.91	**	£6.30	£543
Participant 9	NHS	Psychiatrist consultation	£120.00	60	**	£8.91	**	£1.80	£131
Participant 10	NHS	CT scan	£70.00	60	**	£8.91	**	**	£79
Totals:			£1239	780	50	£116	£7	£9	£1372

3.: Further referrals—provider

Table 3 provides the cost breakdown of further NHS referrals and activity following the initial contact and referral. The total costs to the NHS for referrals and activity following the initial contact for the ten participants were £10,854 (Table 3).

4.: Further referrals—private

The decision to access private care was typically based on the potential to expedite the diagnostic process but also dependent on the person’s financial or insurance position:

‘Fortunately, he had a work cover on an insurance policy, which meant he could get a faster appointment with the neurologist…if we had to wait 18 months or more, you know, we still wouldn’t have known what was going on’. (Participant 5)

Table 4 provides the costs of private consultations (directly incurred by the patient) following the initial contact and referral. Following the initial contact, five participants resorted to paying privately for further investigations and consultations with clinicians at a total consultation cost of £2440 (Table 4). When also considering travel and opportunities, the total cost was £2562 (Table 4).

5.: Diagnosis

Many caregivers described being shocked by the diagnosis, but upon reflection, they were angry about the lack of or quality of information provided:

‘I wish to stress that very clearly, I am very annoyed that I wasn’t given more information’. (Participant 8)

Receiving a diagnosis was perceived by several participants as ‘luck’, encountering a clinician with knowledge about rare dementia rather than due to a clear pathway. Table 5 provides the total costs of the diagnostic pathway. Participant 10 had the lowest costing pathway journey at a total cost of £503, whereas participant 2 had the highest costing pathway journey at a total cost of £8043 (Table 5). The average total pathway cost across the ten participants was £1636 (Standard Deviation (SD) 2288.53). When excluding the outlier of 480 min (reported by participant 3) in our opportunity cost calculation for patient consultation time, the average total pathway cost across the ten participants was £1629 (2290.37).

Table 6 provides a breakdown of resource use costs along the pathways to diagnosis from the healthcare system (NHS) and patient (privately funded by families) perspectives. In terms of total NHS resource use across the pathways to diagnosis, the ten participants reported a total of 73 separate resource use items, at an average cost per item of £173.33 (SD 180.14). Of the participants who had reported resource use that was privately funded by the patient/family, 12 separate resource use items were reported at an average cost per item of £224 (SD193.89). The NHS and privately funded resource use items with the highest cost were memory clinic appointments (£528) and CT scans (£695), respectively (Table 6).

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