Carers of people with dementia
Delayed diagnosis, midiagnosis and contested diagnosis
Timely diagnosis of dementia is crucial for planning the next steps of care for the person living with dementia. However, it is not always the case that a person who has early symptoms of dementia will have a diagnosis of dementia immediately. In interviews with people who care for someone living with dementia, they describe the challenges around seeking a diagnosis that matched what they were witnessing in their daily life with the person living with dementia.
People who displayed ‘out of character’ behaviour and/or were of working age, were diagnosed with another condition initially, treated with no improvement, and then were correctly diagnosed with dementia many years later.
Some people talked about a gap of years between the start of early symptoms and a formal diagnosis of dementia. Others talked about receiving a diagnosis for an entirely different condition and being told there was no treatment available. They began to doubt the diagnosis as the person’s symptoms worsened in a short span of time. There were several people who talked about seeking second opinions with other specialists after receiving a dementia diagnosis.
Johnny talked about his partner’s changing behaviour and how he sought to find an answer.
Johnny recalls how he sought an answer about his wife’s out of character behaviour.
Johnny recalls how he sought an answer about his wife’s out of character behaviour.
SHOW TEXT VERSION
PRINT TRANSCRIPT
And as I say, 10 years ago I went to the GP and I think the first time I went, it was a lady doctor, and I can’t remember her name, and we sat down and she said, “What… what’s the problem?” and I said, “Well,” I said, “there’s a number of problems,” and I remember saying, “[name] will spend hours and hours cleaning,” I said, “and when she goes to the shops she’s shopping and…” and the doc… this lady doctor said… I’m pretty sure, “I’m not sure who’s got the problem here,” and I was… and I didn’t show my anger, but I was absolutely furious, and I thought, ‘I’m telling you…’ maybe I didn’t tell her the right way, but… but she said, “I’m not sure who’s got the problem here.” So that was the beginning I think when my medical contact, and I probably left it for maybe a year, and then went back again, and the local doctor said, “Hi, [name],” he said, “I’m just going to tell you three things and see if you remember them: apple, red, New York,” he said, “and I’ll ask you what those are in a few minutes,” and he spoke for just a few seconds, and he asked her, and of course she didn’t know.
Mind you I must confess – I’d forgotten one of them. And… and I think… I think he… he then referred us to the memory clinic. And this went on for years, going to the memory clinic, and we saw these specialists… dementia specialists I assume, and I think the first rec… I was looking at some papers last night, is 2013, or ’14, ’13, ’14, we saw this specialist doctor, and he did a similar thing, he asked her questions about the prime minister and all those sort of things, and she didn’t… and she couldn’t answer any of them, and he said, “She hasn’t got dementia, it’s…” oh, he said, “We’ll… need to send her for a scan,” so she had her scan and then he said, “it isn’t dementia, it’s age and memory loss.” And her behaviour now has started to get a bit bizarre. I can’t remember specifics, but now she’s doing things that she hasn’t done before. So, it wasn’t just memory, it was behaviour that changed.
And that went on for quite a few years. I’d see this person, he’d ask her questions, and get the same poor response, send for an X-ray and then… or it is a scan, isn’t it, a brain scan, and, “No, the brain hasn’t shrunk,” and then eventually he said, “the brain has… it’s shrunk a little bit – she has dementia,” and that was in 2019. But the only thing that had changed was the results of the scan, and behaviour was pretty much the same, bizarre behaviour.
Johnny recalls how he sought an answer about his wife’s out of character behaviour.
Johnny recalls how he sought an answer about his wife’s out of character behaviour.
And as I say, 10 years ago I went to the GP and I think the first time I went, it was a lady doctor, and I can’t remember her name, and we sat down and she said, “What… what’s the problem?” and I said, “Well,” I said, “there’s a number of problems,” and I remember saying, “[name] will spend hours and hours cleaning,” I said, “and when she goes to the shops she’s shopping and…” and the doc… this lady doctor said… I’m pretty sure, “I’m not sure who’s got the problem here,” and I was… and I didn’t show my anger, but I was absolutely furious, and I thought, ‘I’m telling you…’ maybe I didn’t tell her the right way, but… but she said, “I’m not sure who’s got the problem here.” So that was the beginning I think when my medical contact, and I probably left it for maybe a year, and then went back again, and the local doctor said, “Hi, [name],” he said, “I’m just going to tell you three things and see if you remember them: apple, red, New York,” he said, “and I’ll ask you what those are in a few minutes,” and he spoke for just a few seconds, and he asked her, and of course she didn’t know.
Mind you I must confess – I’d forgotten one of them. And… and I think… I think he… he then referred us to the memory clinic. And this went on for years, going to the memory clinic, and we saw these specialists… dementia specialists I assume, and I think the first rec… I was looking at some papers last night, is 2013, or ’14, ’13, ’14, we saw this specialist doctor, and he did a similar thing, he asked her questions about the prime minister and all those sort of things, and she didn’t… and she couldn’t answer any of them, and he said, “She hasn’t got dementia, it’s…” oh, he said, “We’ll… need to send her for a scan,” so she had her scan and then he said, “it isn’t dementia, it’s age and memory loss.” And her behaviour now has started to get a bit bizarre. I can’t remember specifics, but now she’s doing things that she hasn’t done before. So, it wasn’t just memory, it was behaviour that changed.
And that went on for quite a few years. I’d see this person, he’d ask her questions, and get the same poor response, send for an X-ray and then… or it is a scan, isn’t it, a brain scan, and, “No, the brain hasn’t shrunk,” and then eventually he said, “the brain has… it’s shrunk a little bit – she has dementia,” and that was in 2019. But the only thing that had changed was the results of the scan, and behaviour was pretty much the same, bizarre behaviour.
Mary describes the challenges around trying to get an accurate diagnosis for her working age sister-in-law. Both experienced gaps of years between tests and assessments before an accurate diagnosis was made and treatment was initiated.
Mary describes how the diagnosis for a working age person can be challenging.
Mary describes how the diagnosis for a working age person can be challenging.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Okay. It was about six years ago and my sister-in-law started to forget things, lose things [tch] And it was initially diagnosed as something to do with menopause. And so I think she was prescribed HRT. But the problem just got worse and then I think they just tried this sort of, you know, short term memory, memory clinic kind of diagnostic clinic in the hospital but and also I think she had a brain scan and that just showed nothing. So, the doctor was, you know, least you haven’t got dementia kind of, insensitive comment, really [laughs] as it happens. But the family definitely knew something was seriously wrong and her ability to work, drive, speak, perform basic tasks was gradually eroded over the years. And some of the behaviour was quite, she was very insecure a lot of the time.
And eventually, she was referred to a, eventually referred to a dementia consultant and eventually they managed to, they see the effect on the brain and that was the point at which she was diagnosed with dementia, early onset dementia at the age of 50, which was probably four years after we all knew that something was very seriously wrong. And one of the most insecure things was, for us, was that until there was a diagnosis, there was no help, so, we felt very isolated as a family especially for somebody so young with something so obviously wrong. So, it was probably four years until we got that diagnosis and then it’s been another two years subsequently that at least there’s support groups and at least there’s the ability to apply for some sort of, you know, personal independence payment. But because it’s early onset dementia it’s a relatively small group of people who have that and so, most of the Alzheimer’s care and charity care and institutional care is set up for much older people. So as a, so we found it quite, quite isolating the family basically family’s pulled together.
Mary describes how the diagnosis for a working age person can be challenging.
Mary describes how the diagnosis for a working age person can be challenging.
Okay. It was about six years ago and my sister-in-law started to forget things, lose things [tch] And it was initially diagnosed as something to do with menopause. And so I think she was prescribed HRT. But the problem just got worse and then I think they just tried this sort of, you know, short term memory, memory clinic kind of diagnostic clinic in the hospital but and also I think she had a brain scan and that just showed nothing. So, the doctor was, you know, least you haven’t got dementia kind of, insensitive comment, really [laughs] as it happens. But the family definitely knew something was seriously wrong and her ability to work, drive, speak, perform basic tasks was gradually eroded over the years. And some of the behaviour was quite, she was very insecure a lot of the time.
And eventually, she was referred to a, eventually referred to a dementia consultant and eventually they managed to, they see the effect on the brain and that was the point at which she was diagnosed with dementia, early onset dementia at the age of 50, which was probably four years after we all knew that something was very seriously wrong. And one of the most insecure things was, for us, was that until there was a diagnosis, there was no help, so, we felt very isolated as a family especially for somebody so young with something so obviously wrong. So, it was probably four years until we got that diagnosis and then it’s been another two years subsequently that at least there’s support groups and at least there’s the ability to apply for some sort of, you know, personal independence payment. But because it’s early onset dementia it’s a relatively small group of people who have that and so, most of the Alzheimer’s care and charity care and institutional care is set up for much older people. So as a, so we found it quite, quite isolating the family basically family’s pulled together.
Jackie talked about her partner’s disbelief when he received a dementia diagnosis in his 50s. She talks about their journey to reach an accurate diagnosis over a 10-year period.
Jackie talks about complications around diagnoses in a working age person.
Jackie talks about complications around diagnoses in a working age person.
SHOW TEXT VERSION
PRINT TRANSCRIPT
I said, you know, there’s possibility it, it could be something serious or what do you think it might be? I said, “Well, you know, I said, I don’t think it’s anything like a brain tumour because you’ve not got any physical problems.” I said, “But, you know, god forbid that it’s something like, you know, an early dementia or something like that best to get it checked out.” So, he did agree to go to the GP and wanted me to go with him. And when we sat a there and the GP said, “So, why, you know, why are you here [name]?” Well, he just sort of like refused to speak and said, “Ask her.” [Laughs] And the doctor like tried to pursue that with him and he said, “She thinks I’ve got dementia.” The doctor was a bit taken aback and I said, “Well, it’s not exactly what was said.” So, we got to see neurology and they made a diagnosis of Alzheimer’s within 15 minutes without having any scans or anything.
And me being a pharmacist whose special area of interest is dementia, I was like, “Well, that’s not right.” But the situation at home had escalated ever such a lot that when they said that they would put him on Donepezil I was like, well actually let’s just try it and see.” Things improved quite a lot. And, unfortunately, when it came to advising the DVLA and his insurance about the Alzheimer’s [name] decided to get a second opinion. And the second opinion outcome was that he had mild cognitive impairment which I didn’t believe to be true at all that somebody you know, who is, by then he was like 54 having mild cognitive impairment, that is not, you know, I don’t, I didn’t, I wasn’t happy about that diagnosis. But he was very happy because now he didn’t have to tell the insurance.
And, as a consequence of that, he got taken off the Donepezil and things went downhill very very rapidly. And about two years later, we managed to get him back on Donepezil through the GP. But the pharmacist reviewed his records and saw that he didn’t have the official diagnosis of Alzheimer’s and he got taken off it again. Everything went downhill.
So, in February ’19 he had the scan. And in April ’19 he had the diagnosis of Alzheimer’s and he’s got occipital and parietal lesions. And they have a bigger MDT (Multi Disiplinary Team) and they reviewed his two previous scans. So, he had the first scan with neurology when he was 52 and the second one at 54 when he was challenging his diagnosis, asking for a review. And although those MRIs at 52 and 54 they said that there was no issue with them. Once they knew where the lesions were from the PET scan and they examined the MRIs retrospectively they could see that there was a change. So, that was an MDT with old age psychiatry neurology and radiology. And so, yeah, he, he had then a diagnosis of early onset. Well, I think very early onset Alzheimer’s. If I was noticing issues when he was 50 then that is very very early, yeah.
Jackie talks about complications around diagnoses in a working age person.
Jackie talks about complications around diagnoses in a working age person.
I said, you know, there’s possibility it, it could be something serious or what do you think it might be? I said, “Well, you know, I said, I don’t think it’s anything like a brain tumour because you’ve not got any physical problems.” I said, “But, you know, god forbid that it’s something like, you know, an early dementia or something like that best to get it checked out.” So, he did agree to go to the GP and wanted me to go with him. And when we sat a there and the GP said, “So, why, you know, why are you here [name]?” Well, he just sort of like refused to speak and said, “Ask her.” [Laughs] And the doctor like tried to pursue that with him and he said, “She thinks I’ve got dementia.” The doctor was a bit taken aback and I said, “Well, it’s not exactly what was said.” So, we got to see neurology and they made a diagnosis of Alzheimer’s within 15 minutes without having any scans or anything.
And me being a pharmacist whose special area of interest is dementia, I was like, “Well, that’s not right.” But the situation at home had escalated ever such a lot that when they said that they would put him on Donepezil I was like, well actually let’s just try it and see.” Things improved quite a lot. And, unfortunately, when it came to advising the DVLA and his insurance about the Alzheimer’s [name] decided to get a second opinion. And the second opinion outcome was that he had mild cognitive impairment which I didn’t believe to be true at all that somebody you know, who is, by then he was like 54 having mild cognitive impairment, that is not, you know, I don’t, I didn’t, I wasn’t happy about that diagnosis. But he was very happy because now he didn’t have to tell the insurance.
And, as a consequence of that, he got taken off the Donepezil and things went downhill very very rapidly. And about two years later, we managed to get him back on Donepezil through the GP. But the pharmacist reviewed his records and saw that he didn’t have the official diagnosis of Alzheimer’s and he got taken off it again. Everything went downhill.
So, in February ’19 he had the scan. And in April ’19 he had the diagnosis of Alzheimer’s and he’s got occipital and parietal lesions. And they have a bigger MDT (Multi Disiplinary Team) and they reviewed his two previous scans. So, he had the first scan with neurology when he was 52 and the second one at 54 when he was challenging his diagnosis, asking for a review. And although those MRIs at 52 and 54 they said that there was no issue with them. Once they knew where the lesions were from the PET scan and they examined the MRIs retrospectively they could see that there was a change. So, that was an MDT with old age psychiatry neurology and radiology. And so, yeah, he, he had then a diagnosis of early onset. Well, I think very early onset Alzheimer’s. If I was noticing issues when he was 50 then that is very very early, yeah.
Carol spoke of the challenges to receive a dementia diagnosis for her partner who had to give up his work. He could no longer complete tasks and was finding it difficult to continue.
Carol describes the delay in receiving a diagnosis for her working age partner.
Carol describes the delay in receiving a diagnosis for her working age partner.
SHOW TEXT VERSION
PRINT TRANSCRIPT
And then he realised that the he couldn’t do mental arithmetic anymore which was a big part of his job and then he’d forget what cases he was working on and what he’d done on them and so he had to give up. So, that was the beginning of it, really. And, yeah, that was 2018 January in the January.
And did he have to go to, did you have to go to the GP or how did he get, has he been diagnosed or had he not?
No, he hadn’t been diagnosed then. We went to the GP and they thought it might have been ME (Myalgic encephalomyelitis, also known as chronic fatigue syndrome) but they referred him to the memory clinic in [location]. We saw a doctor there and he thought it was cognitive impairment. And he said there was no treatment for it which I wasn’t really very happy about, but you do tend to believe what they tell you. And so then we waited we saw him again I think about a year later ‘cause [name] had deteriorated a bit and he still said the same thing. And then, a year after that, I thought, this isn’t, this isn’t right. There’s gotta be something. So, I asked for him to be referred to [hospital name and location] who I read had a very good neurological section and that was 2020. And the consultant we saw there disagreed with the original diagnosis. He said, “Well, you’re not cognitive impaired if you can’t work anymore. So, you know, there’s definitely something worse than that. And he diagnosed the Alzheimer’s disease then; That was August 2020. He put him on Donepezil tablets and that, that was the beginning of it, really.
Carol describes the delay in receiving a diagnosis for her working age partner.
Carol describes the delay in receiving a diagnosis for her working age partner.
And then he realised that the he couldn’t do mental arithmetic anymore which was a big part of his job and then he’d forget what cases he was working on and what he’d done on them and so he had to give up. So, that was the beginning of it, really. And, yeah, that was 2018 January in the January.
And did he have to go to, did you have to go to the GP or how did he get, has he been diagnosed or had he not?
No, he hadn’t been diagnosed then. We went to the GP and they thought it might have been ME (Myalgic encephalomyelitis, also known as chronic fatigue syndrome) but they referred him to the memory clinic in [location]. We saw a doctor there and he thought it was cognitive impairment. And he said there was no treatment for it which I wasn’t really very happy about, but you do tend to believe what they tell you. And so then we waited we saw him again I think about a year later ‘cause [name] had deteriorated a bit and he still said the same thing. And then, a year after that, I thought, this isn’t, this isn’t right. There’s gotta be something. So, I asked for him to be referred to [hospital name and location] who I read had a very good neurological section and that was 2020. And the consultant we saw there disagreed with the original diagnosis. He said, “Well, you’re not cognitive impaired if you can’t work anymore. So, you know, there’s definitely something worse than that. And he diagnosed the Alzheimer’s disease then; That was August 2020. He put him on Donepezil tablets and that, that was the beginning of it, really.
Last reviewed April 2025.
Copyright © 2024 University of Oxford. All rights reserved.