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Expert Q&A: Diagnosis - Thurs 19 May, 3:30-4:30pm

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SimonW

Registered User
Nov 22, 2018
31
0
Norfolk, UK
So many members write of how hard it is to persuade the person to go to their GP to even begin the process of diagnosis ...
then having the GP fall under the spell of 'host mode' and not see any problem ...
also that a GP may not really take on the info given by family ...
and the person goes on to tell consultants/memory clinic that nothing's wrong and/or cancel the appointment ...
Or medics say they can do nothing without the permission/cooperation of the person ...

ways around all this?
does GP training cover these key issues that create problems for family wanting to support the person they are concerned about?
Hi Shredech,

Struggling to persuade someone to go to their GP or memory service is a really common problem. Most often it's caused by either not recognising their symptoms as potentially being an illness ('it's just old age'), denial (not wanting to face the possibility) or lack of insight (where the disease prevents the person from understanding that they're having problems). The first is relatively east to solve with constructive discussion and good quality information, or talking to a GP or community nurse. Denial is harder and may take some time - or they may need to get a bit worse before they're able to make the decision to see the GP. Lack of insight though is probably the hardest and leads to a lot of people not getting the diagnosis they need. When this happens it can sometimes help to suggest going to the GP for a general check-up, during which the GP could assess their memory and thinking, or you could try to arrange a home visit if the person is unable to attend the GP surgery (either due to physical disability or because of potential dementia). The latter would still need their cooperation though, unless their diagnosis was really very clear.

The ‘host effect’ you describe is a common feature of many dementia assessments – particularly when a person lacks insight into their condition and the assessment is being done in the person’s home where they’re generally able to function better than in a strange clinic environment. One way to allow for this is to do a ‘collateral interview’ with a family member to get a sense of whether the answers to questions are likely to be correct. If there’s a big difference between the responses of the person and the ‘informant’ (family member) then this might indicate a lack of insight. On the other hand, it could indicate that the family member is wrongly attributing certain symptoms as dementia when they’re not (this can happen), so the clinician needs to use their experience and judgement to work out what’s the most likely.

I hope this helps.

Best wishes,

Simon
 

SimonW

Registered User
Nov 22, 2018
31
0
Norfolk, UK
Hi

Can the process of diagnosis be made simpler ?

What happens after a diagnosis? Hospitals are for making you better and if they can't make this better then are you discharged from the care of the neurologist? to where and to who?
Hi Serena,

Thanks for your question. The process of assessment and diagnosis should be clear and straightforward if it's done well. Unfortunately this isn't always the case - and sometimes a person's condition may be difficult to diagnose even with best practice.

After diagnosis, there should be a discussion about a care plan - sometimes involving medication but it should also involve directing people to sources of support. The memory service should generally offer cognitive stimulation therapy (CST) and other psychological support to help a person adjust their diagnosis. And then, when they're set up (hopefully well) they can be discharged back to the day-to-day care of their GP.

Although we're focusing on diagnosis this year, there is still a huge amount to do on making post-diagnostic support better. This has been particularly the case during the pandemic. Hopefully we'll see things improve a lot as this issue gets more attention.

Best wishes,

Simon
 

SimonW

Registered User
Nov 22, 2018
31
0
Norfolk, UK
Are we at higher risk if our mom has dimentia?
Hi Beulah,

Thanks for you question. I'm assuming you mean your risk of getting dementia in the future? If this is the case, check out our information on dementia risk in families:

In general, a single close relative with dementia only increases a person's risk by a little bit. Two or more would start to look like there may be more of a genetic component.

For more detail on this we have a factsheet on Genetics of dementia.

Best wishes,

Simon
 

SimonW

Registered User
Nov 22, 2018
31
0
Norfolk, UK
I am a newbie to dementia and being a carer, and this is my first post on an online forum. What is the best way to comfort a person who gets a dementia diagnosis?

I am going with my mother for a diagnostic appointment tomorrow. She has all the symptoms of dementia and we will probably get the news no-one wants to hear. How to we deal with the immediate aftermath?
Hi Anzie,

Welcome to the Talking Point community, and wishing you all the best for your mother’s appointment tomorrow. Getting a diagnosis can be daunting, but once your mother knows what’s causing her symptoms, she can start to get support. Our research shows that 91% of people affected by dementia say there are benefits to getting a diagnosis.

Everyone is different and deals with a dementia diagnosis in their own way, so keep in mind that your mother might not react as you expect. She may feel upset, angry, anxious, or even relieved that she has an answer. It’s important to give her time to process her feelings, as she might not feel ready to talk about it right away. Think about other difficult situations your mother might have experienced in the past, and what helped her through those times. What usually brings her comfort when she is upset? Similar techniques might work here too.

Our information on Receiving a dementia diagnosis has details of the support that’s available, and helpful resources for you and your mum understand more about dementia. It is possible to live well with dementia, and choosing to focus on the things you can control can really help. Do your best to make sure that your mother doesn’t become isolated, and still makes time for the things she enjoys. Hearing from others about how they coped with being diagnosed might help your mother realise that she’s not alone and can still live well – see Gina’s story as an example. Communities like Talking Point can be a great source of comfort, so you’re in the right place.

I hope this helps, and that you get the answers you need tomorrow.

Best wishes,
Simon
 

SimonW

Registered User
Nov 22, 2018
31
0
Norfolk, UK
i would like to ask what is the possibility of a wrong diagnosis
Hi Silver'lantern,

Thanks for your question. It's a difficult one to answer with exact statistics as many wrong diagnoses never get picked up so we don't have great evidence to see what's going on.

Certainly most clinicians would agree that dementia diagnosis is a lot more challenging that most people realise and that it's often quite difficult to tell whether (a) the person has dementia rather than some other condition causing problems with memory or thinking, and (b) if they do have dementia, that they get diagnosed with the correct type (e.g. Alzheimer's, vascular, Lewy body, etc). An exact diagnosis is only 100% certain when you look at a person's brain tissue once they've died. Until then it's a clinical judgement based on a combination of different types of information - interviews, cognitive testing and brain scans.

Often a dementia diagnosis is very reliable - particularly when a person has very 'classic' symptoms and they're very clear to see. However, in the real world people don't always look like a textbook case and sometimes a diagnosis may be the best possible explanation a clinician can make at the time.

The main thing is to follow up with your doctor if the condition doesn't follow the expected course for dementia. So if the person doesn't progress after several years, it's possible the original diagnosis may have been wrong. If that's the case, then you should ask for a follow-up assessment to see if the diagnosis has changed.

Some people with more unusual types of dementia can get several different diagnoses before they eventually get the right one - particularly if they're younger or have a complex set of symptoms.

I hope this helps.

Best wishes,

Simon
 

Sarasa

Volunteer Host
Apr 13, 2018
5,031
0
Nottinghamshire
Thanks for your reply @SimonW . The psychiatrist was sent to see mum at home by her GP's surgery who were concerned by her behaviour. They told the family they were doing this, but not when he would be coming and as none of the family lived near her we couldn't be there at the time. He did put my brother on speaker phone to chat to him while he was with mum. In lots of ways it was the best outcome for us
 

SimonW

Registered User
Nov 22, 2018
31
0
Norfolk, UK
How exact a diagnosis can you give? Can you be more accurate than the three stages? What are the bits of information that you would need to be able to make a diagnosis. For example, my mother has recently become more and more abusive however I first noticed a consistent 'forgetfulness' in 2005. She can't remember Spanish (her original native tongue) or long term friends. However she is able to still able to move around (albeit slowly).

As mentioned earlier, I'd be interested to find out how to get an accurate diagnosis from someone who doesn't believe they have the condition.

Thanks
Thanks for your question. I've addressed this one a little bit already with silver'lantern's post (#26) but in terms of staging, it's not always possible to say exactly where a person is by stage. This is because dementia is incredibly variable in how each person goes through it. We have textbook definitions and descriptions but in reality it's much more mixed and messy.

It's a very long time since 2005 - 17 years - and it would be quite unusual for someone with Alzheimer's disease to live that long, let alone still be moving and communicating effectively. It's also more common for people to revert to their original language rather than forget it and go with their adopted language. That said, Alzheimer's disease and other types of dementia affect everyone differently so I'm certainly in no position to question the original diagnosis based purely on time since first onset of symptoms.

By all means take a look at our progression factsheet if it would be useful. However, if you feel that the diagnosis of dementia doesn't feel right, you would be entitled to get a follow-up assessment, although you may need to make a case that the original one may have been invalid. You could try talking to your GP about this.

If you have the resources, you could ask for a private consultant to re-examine your mother, but this typically costs somewhere between £500-750 (without brain scans) and may not be feasible for everyone. So do try the NHS route first.

One alternative might be to ask for a specialist dementia support nurse to visit your mother. Admiral nurses are available in many areas (not all, I'm afraid) and they may be able to help identify the cause of her abusive behaviour, as well as offer an informal opinion on whether the person has typical symptoms for dementia.

In the meantime, you might find our information on changes in behaviour in later stages of dementia useful.

I hope this helps.

Best wishes

Simon
 

SimonW

Registered User
Nov 22, 2018
31
0
Norfolk, UK
Are changes in taste significant? My wife will often say that her coffee tastes of nothing but at other times she likes the taste and it is very good. I make it in the same way every time - only instant but the same one each time? Also she will think some food is fine one day but the same thing another day will be something that she does not want again. It's getting hard to find things that she will eat consistently.
Hi jzw01,

Thanks for your question. Yes, it's very common for this to happen. It's hard to predict what foods will become less enjoyable although often there's a gradual move towards sweeter foods as dementia progresses. As a result, it can be challenging to keep a person you're caring for eating well. I've found some good NHS resources that might help with this.

It's worth noting that this can be really upsetting for a person when they can no longer enjoy a food or drink that they've always had as part of their life. It can feel particularly cruel for dementia to deprive you of the simple pleasure of a cup of tea or coffee, but unfortunately it happens and it's a difficult thing to have to adjust to.

On slightly different angles, food preferences can change because of difficulties with chewing and swallowing. If this happens, ask for a referral to a speech and language therapist or a dietitian who will be able to help. And problems with mood or physical issues like indigestion, incontinence or constipation can also make someone less likely to want to eat. So it's important to take a broad or 'holistic' view when looking at reasons why a person may not be eating as it's not always that the food doesn't taste good anymore. From what you've told me though this is probably the case here!

Best wishes,

Simon
 

SimonW

Registered User
Nov 22, 2018
31
0
Norfolk, UK
Thanks for your reply @SimonW . The psychiatrist was sent to see mum at home by her GP's surgery who were concerned by her behaviour. They told the family they were doing this, but not when he would be coming and as none of the family lived near her we couldn't be there at the time. He did put my brother on speaker phone to chat to him while he was with mum. In lots of ways it was the best outcome for us
Thanks, Sarasa. Often in situations like yours often it's about finding the best solution possible - even if it's not exactly ideal. Most memory services do their best to try to provide a good service but it's far from a perfect system!

Best wishes,

Simon
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,681
0
London
Time to wrap up today's Q&A session. Thank you so much @SimonW for putting so much thought and care into your answers, and for kindly giving us your time! I hope everyone reading this finds it helpful too.

We'll be posting the rest of the answers on Simon's behalf.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,681
0
London
Question via email:

"My husband has been diagnosed with Frontal varient Alzheimer's Disease with a differential diagnosis of Frontal Temporal Dementia at the beginning of this year following a 4.5 year decline in his memory. He has lost any social filter and appears quite uncaring with his conversation. He also very emotional at times.
My question is how does frontal varient Alzheimer's differ to frontal temporal Alzheimer's. I have asked our assigned specialist nurse at the Julian hospital in Norwich but have not had a response. My husband started on Donepezil 5 mg OD for three months but he just slept so much more and had headaches so the hospital have stopped them. 
I appreciate hospitals are busy but I have to have answers and help for my husband.
We are both struggling, my husband is in total denial that he has this and I am exhausted both physically and mentally trying to deal with it.
Thank you for listening"

Simon's answer:

Hi,

As you probably know by now, frontal variant AD is a rarer type of Alzheimer’s disease that mostly affects the front part of the brain (frontal lobe) during the early stages. For most people with ‘typical’ Alzheimer’s disease the part of the brain that gets affected first is the part involved in memory, which is in the middle of the brain (temporal lobe). In frontal variant AD though, it’s not so much memory that gets affected during the early stages but more the ‘higher’ functions like attention, reasoning, empathy, emotional regulation, social skills, decision-making, planning and organising. One term that sums up much of the skills lost in frontal lobe damage is ‘executive dysfunction’. The brain injury charity ‘Headway’ has an excellent webpage explaining what this is and how it can affect a person’s thinking and behaviour.

In fact, the type of dementia that resembles frontal variant AD much more than typical memory-led Alzheimer’s disease is one called ‘behavioural variant frontotemporal dementia’ (bvFTD). Although the diseases in the brain are slightly different (a different type of faulty protein) frontal variant AD causes pretty much the same types of symptoms as bvFTD in practice.

We have some hopefully useful information that explains what FTD is (we don’t have much on frontal variant AD except a brief mention in the Rarer Types of Dementia content). In terms of caring strategies, the advice for the two conditions is largely the same. Both conditions are particularly hard on family carers (probably not news to you!) as (a) it’s very common for a person to lack insight into their condition (they don’t realise they have dementia), which makes it so much harder to care for and support them, and (b) it can feel much more as if you’re ‘losing the person’ because their behaviour and personality changes so much, even during the early stages.

It’s really important to understand that when the person says something that might appear to be unsympathetic, harsh or even cruel, it’s because the parts of the brain that would normally ‘advise’ on the social appropriateness of a remark just aren’t working anymore, and neither are the parts that try to work out what another person might be thinking or feeling. This can make the person seem very selfish or unfeeling, but they have little or no ability not to be selfish as they can no longer put themselves into the shoes of other people and understand how a tactless remark might be hurtful. Often being able to understand that it’s the dementia that is causing them to be hurtful – and not the person themselves – helps to reduce the impact of these negative behaviours and so they get easier to live with.

The most important thing to remember is that you’re not alone – even if sometimes you might be the one doing most of the caring (hopefully you get some help and support). There are lots of other carers in similar situations whose partners have symptoms caused by FTD. Rare Dementia Support is a wonderful charity with whom we work closely. They run a support group for people with FTD (and their carers) that you might want to join.

I hope this helps.

Best wishes,

Simon
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,681
0
London
Question via email:

"Hi, my dad is 92, with vascular disease. A CT scan has shown multiple small infarcts and he was prescribed clopidogrel. He has very obvious signs of dementia, Inc memory loss, cognitive impairment, bizarre behaviours, reduced functioning in every aspect but no doctor has ever used the words dementia. 
I moved in with him 5 years ago, and there are family and friends who support us. He is logged as housebound and receives domiciliary dental and audiometry services.
My question is should dad have an 'official' dementia diagnosis? Would it be of any benefit?
Many thanks"

Simon's answer:

Hi,

Thanks for this question. The GP may well have thought that it wasn’t worth your father going through the stress of assessment and diagnosis as he seems to be already receiving all the medical and personal care that he needs. They may be concerned that a diagnosis would just be upsetting. And then of course there’s the stigma.

However, let’s explore this a bit further:

The most commonly reported benefits of getting a diagnosis are:
  • Confirmation: Sometimes a person’s cognitive symptoms might not be caused by dementia but instead something that’s actually treatable. This could be depression, drug side effects, vitamin deficiency, thyroid disease, or a variety of other health conditions. If we assume that it’s dementia, then the person might end up having untreated cognitive and behavioural symptoms for the rest of their life when they needn’t have done so, which would be a terrible tragedy. A diagnosis at least confirms the cause of the person’s symptoms and allows acceptance to move forward and plan effectively.

  • Treatment: Although the obvious type of dementia for someone with multiple brain infarcts would be vascular dementia, it’s still perfectly possible for them to have Alzheimer’s disease – either alone or in combination with vascular dementia (mixed dementia). If this were indeed the case, they might be eligible to be prescribed medication that could improve their symptoms, such as donepezil. These drugs aren’t life-saving but they do help a lot of people – at least for a while. And there’s good evidence that they work even if taken during the moderate-to-late stages of dementia.
    Note: if the dementia is purely vascular dementia, then these drugs would not be effective and so wouldn’t be prescribed.

  • Access to support: It sounds as if your father is already being well-supported by you and your family. Technically, a diagnosis itself shouldn’t make much of a difference to the amount of social care support or benefits he receives, since this should be based solely on his level of disability. However, there are specific dementia support services that he would be able to access if he were to get a diagnosis. This includes social activities and various non-drug therapies, such as cognitive stimulation therapy (CST) or music therapy.

  • Understanding the person’s situation: Lastly, people often underestimate the value of getting an explanation for why a person can no longer do the things they used to do – or behave as they used to do. If your father were diagnosed with dementia and those around him were to learn more about the condition, they would most likely be able to support him better. In addition, the ‘bizarre’ behaviours you mention might well become easier for you to process emotionally, since you’d be able to understand that the strange behaviour was just a symptom of a brain disease and not your father ‘behaving badly’, which would otherwise be very hurtful.
Each person’s situation is different, of course. It might be that after considering all of the above, you still feel that the benefits of an assessment are not worth the potential harms for your father. You might be worried that they’d find cognitive testing or getting a brain scan distressing or exhausting, or that they would react badly to bad news.

Assessments can generally be tailored to the individual though. If he’s very disabled to the point where he would find an excursion to the GP or memory service very challenging, it is possible to request an assessment at home in most places. And brain scans aren’t always required – particularly when there’s a recent CT scan available already. It’s also possible for the person to request not to be told their diagnosis – it being given instead to a family member or someone close to them. This way they can still get some of the benefits of a diagnosis without the emotional impact of knowing that that have the condition. Ask your local memory service for more information about this option, if you think it might be suitable.

I hope this helps.

Best wishes,

Simon
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,681
0
London
Question via email:

"Hello,
My mum is struggling with her memory and her Dr has referred her to the memory clinic months ago but she has not received anything or been contacted by anyone.
I’ve arrived from Australia to take care of things for her and have power of attorney for health and finance. Is there a helpline or anyone who can help?

She is sleeping lots, not eating as she should be and has some mobility issues. She recently lost her driving licence too.

My brother has moved in with her to care for her but she needs assessing for treatment, carers and accessibility to her shower. Any info you can offer would be very helpful,

Thanks"

Simon's answer:

Hi,

Thanks for your question. Due to the backlog from COVID there are still substantial delays in some parts of the country where the target of no more than 6 weeks from GP referral to memory service assessment just doesn’t happen. In many cases it can take a few months, but in some places it can be even longer – sometimes more than a year. This is clearly very unsatisfactory as people are having to wait much longer than they should.

It’s all the more frustrating though if you don’t know what’s going on. It’s probably a good idea to contact your mother’s GP first (well done for sorting POA, by the way – that should help) and ask them what the current status of the referral is. Has the GP’s letter gone out? Has it been acknowledged and an appointment scheduled? If the GP is not particularly helpful you could try contacting the local memory service, although you might need to show them your POA first before they feel able to discuss the matter with you. Of course, if your mother is still able to discuss the issue by phone then she could do this herself – perhaps with your support on speakerphone.

If the memory service your mother has been referred to is one of those that has very substantial delays, you could ask to be referred to another service with a shorter waiting list – perhaps in an adjoining area. You could try asking your GP or local memory service if they know the typical waiting times for different services and to change to one that will be quicker.

Also, if you think that your mother might have an urgent reason to get an assessment – perhaps she is deteriorating or experiencing particularly distressing symptoms – then do make sure that you tell the GP or memory service this as it may help to get them seen earlier.

In the meantime, do feel free to call our Dementia Connect support line on 0333 150 3456. They’re not an NHS service so won’t be able to give you updates on the your referral status, but they may be able to put you in touch with one of our offices in Cheshire who would hopefully know more about the local situation in terms of waiting times.

There are also some good information resources on the DCAN website on coping during the period while you’re waiting for an assessment, such as this one below:

Living well while waiting for a memory assessment:
https://www.nextsteps.org.uk/wp-content/uploads/2021/06/NS_downloadable.pdf

I hope this helps.

Best wishes,
Simon
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,681
0
London
Question via email:

"Hi my mum has vascular dementia since she was 65 she is now 79 her elder brother also has vascular dementia and her younger brother also passed away from vascular dementia aged 70.

I am wondering if this is common as there mother didn’t have it and lived until she was 92 we don’t know about there father as he passed away with lung cancer in his 40s, I am worried about my short term memory is there any test to determine if it could be hereditary?
Thanks in advance"

Simon's answer:

Thanks for your question. It’s certainly unusual to have so many people in one generation who develop dementia, let alone the same type. It may be bad luck, but I think you would probably be justified in asking for a referral to a local genetics service for further help on this – particularly if you feel your memory or thinking may be getting worse. The first step though would be a conversation with your GP who can explore what might be causing any problems and refer to the appropriate specialist, if needed. If you’re able to get a bit more information on your grandfather’s side of the family – i.e. whether they had dementia, stroke or heart disease at some point – that would probably be really helpful.

We don’t know as much about the genetic risks of vascular dementia as we do for Alzheimer’s disease. There haven’t been many genes that have been found which cause vascular dementia to run strongly in families – with the notable exception of CADASIL, but generally this condition tends to cause young-onset vascular dementia much earlier than in your description. There are some other genes that are known to cause stroke to run in families but they’re generally quite rare.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,681
0
London
Question via email:

"I can remember my father having test for diagnosis in a room on his own. How would they get a true test of how bad the dementia is, if the person they are testing is hard of hearing, and is not very good with puzzles and saucy like?"

Simon's answer:

Thanks for your question. The issue of the reliability of diagnoses is something that’s come up a lot recently due to dementia assessment and diagnoses having to be done remotely, or even over the phone in some cases.

A home visit though should be more reliable in some respects as the clinician can see the person in an environment that’s less intimidating for them as well as observing how well they’re able to function in their own living space. They can have a thorough conversation with the person and any family members who are able to contribute, and they can carry out a detailed cognitive assessment that involves lots of different types of thinking. These tests are designed to detect problems with thinking whether the person is good at doing quizzes and problem-solving or not. And the clinician doing the assessment would normally take into account the background and education of the person they’re assessing, so a retired brain surgeon who had studied all their life would typically be expected to get a higher score than a retired factory worker who left school at 16. The results of the cognitive test are only one part of the process and a skilled clinician won’t rely on it to give them a ‘yes’ or ‘no’ result.

It sounds like your father hasn’t had a brain scan, which can sometimes be helpful for telling what type of dementia a person has, as well as what may be going on in their brain. It’s not always essential to have a brain scan to get a dementia diagnosis, but recently many more people than normal are not having them because of delays in accessing the radiology services in hospitals. Unfortunately, this is a really big problem that’s not limited just to dementia.

I hope this helps.

Best wishes,

Simon
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,681
0
London
Question via email:

"Hello. I have a question about diagnosis. 
Because of the long waiting time for a first appointment at the memory clinic, we recently paid (£1,000) for a private assessment (ACE III) at home. The person who performed it may well be the person who eventually does the NHS assessment, as they also work for the regional trust. 
The report we received (and which went to the GP) was quite anecdotal, reported things the subject said as though they were factual, and made comments suggesting the subject was ‘fine’ because family were able to provide support, despite a clear dementia score. It’s not at all useful for moving forward. 
My question Is: why do professionals not take into account the denial and ‘host mode / showtiming’ that family are all too aware of? Is it really necessary for family to send notes to guide the assessor? And shouldn’t the report be only about the medical condition, not the care aspects?"

Simon's answer:

Hi,

Thanks for your question. We’ve been getting lots of questions about private dementia assessments over the last year or so as more and more people have had to resort to this option due to the backlog at local NHS memory services.

I’m not a qualified clinician and so am unable to say whether such an assessment is reliable – particularly for any individual. However, £1,000 for a simple home-based test sounds quite expensive – assuming you weren’t also paying for blood tests and a brain scan. I would be interested to know what kind of clinician they were (old age psychiatrist, clinical psychologist, neurologist, etc), what else they did other than an interview and ACE-III cognitive test, and how long they spent with you overall.

The ‘host effect’ you describe is a common feature of many dementia assessments – particularly when a person lacks insight into their condition and the assessment is being done in the person’s home where they’re generally able to function better than in a strange clinic environment. One way to allow for this is to do a ‘collateral interview’ with a family member to get a sense of whether the answers to questions are factually correct. If there’s a big difference between the responses of the person and the ‘informant’ (family member) then this might indicate a lack of insight. On the other hand, it could indicate that the family member is wrongly attributing certain symptoms as dementia when they’re not (this can happen), so the clinician needs to use their experience and judgement to work out what’s the most likely.

The ACE-III test is less susceptible to this kind of problem though. If a person scores poorly on this test it means that they may well have cognitive problems. These may or may not be caused by dementia but it would not generally indicate that the person is ‘fine’ unless their ‘baseline’ function was already low, as can happen with people who have developmental disorders or learning disabilities.

It’s not always necessary to get a brain scan, but it is often helpful to explain what might be going on in the person’s brain. A brain scan is not definitive though – at least as much as most people think it is. And for many people a dementia diagnosis is possible without having to get a scan (although accurately diagnosing the type of dementia can be more challenging without a brain scan).

Lastly, the reference to the person being ‘fine’ is quite ambiguous. Any report resulting from a private assessment should contain a conclusion that makes it quite clear whether they think the person is healthy or has a medical diagnosis. One interpretation is that they found no evidence of dementia or other illness. Another might be that the person has dementia but is being well cared for and supported and is not in need of medical or social care intervention.

I would try to find out which one of these the clinician was referring to and get confirmation about whether they think the person has dementia or not. If they say that they didn’t think it was dementia and you suspect they may be wrong, you’d be entitled to seek a second opinion from a local NHS memory service. I’m not sure whether they would want to repeat the assessment process or just use the test results already available, but obviously there may be a wait involved.

In terms of recourse to the private clinician if you’re not satisfied with their service, this is something you’d need to resolve with them informally, make a complaint to their professional regulating body (e.g. GMC), or else take legal advice from a solicitor.

I hope this helps.

Best wishes,

Simon
 

HarrietD

Administrator
Staff member
Apr 29, 2014
7,681
0
London
Question via email:

"After 18 months of blood tests, memory clinic ACE test and brain scan we finally have an appointment at the LLAMS hospital with a consultant psychiatrist next week for my husband. What happens at this appointment, will we get a diagnosis and medication and info as to how his illness will progress?
Thank you."

Simon's answer:

Thanks for your question. I’m sorry to hear it’s all taken so long to get to this point. Many memory services have been struggling to keep up during COVID and there has been a particular problem accessing brain scans during this period too. It’s led to many people waiting far longer than normal to get a diagnosis.
For most dementia diagnoses, there are three types of assessment once you get to the memory service stage:
  1. an interview where you discuss the problems you’ve been having and how it’s affecting your day-to-day living;
  2. a detailed cognitive test that looks at different aspects of memory and thinking (and possibly other questionnaires too);
  3. a brain scan that looks for evidence of what’s happening in the brain
It sounds as if you’ve done all these so one would certainly expect the next stage to be the consultation where you find out what the doctor thinks may be the reason for your husband’s symptoms.

The doctor should ideally be very clear about whether they think it’s dementia or not.

If it is dementia, then:
  • they should tell you what type of dementia it is, such as Alzheimer’s disease, vascular dementia or something else. Sometimes the results of tests are not clear though and so they have to say that it’s just ‘dementia’.
  • They should suggest medication if appropriate – although it’s only used for some types of dementia, not all of them.
  • They should direct you to a local source of support and information like one of our Dementia Connect services.
  • They should arrange for a follow-up visit in a few weeks to check how your husband is doing and for him to access post-diagnostic support, such as cognitive stimulation therapy (CST), which is available at most memory services, and psychotherapy if needed.
If the consultant thinks that your husband does not have dementia, then they should still explain what they think is likely to be the problem. If they are unable to tell, they may need to organise more tests or refer to another specialist.

For more information on this, check out Chapters 4 and 5 in our new booklet on assessment and diagnosis.

Good luck. :)

Best wishes,

Simon
 

HarrietD

Administrator
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Apr 29, 2014
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London
Question via email:

"Hello, a desperate plea...
I would really appreciate some help if possible with the following;
My Greek speaking mother has been living with us for past five years as she could no longer cope on her own. Over that time mum has sadly developed loss of short term memory, confusion, hallucinations both visual and auditory, mood swings and at times aggressive behaviour. Her English is limited and I act as her translator with GP visits etc.
Mum has not been diagnosed as yet, possibly because of the language problem. She refuses to see that what she is experiencing is a mental health problem.
Any suggestions as to how we can access a Greek speaking professional who could gently help her see the need for a proper diagnosis? We live in Somerset.
Thank you for taking time to read this.
Many Thanks"

Simon's answer:

Thanks for your question and sorry to hear that you’ve been struggling on your own without support for so long.

Language barriers are certainly a challenge when it comes to getting a diagnosis. Having you to translate is certainly a massive help but it’s possible that things might end up getting lost in translation – particularly when there aren’t exactly equivalent terms for certain things in each language. What tends to happen is that the clinician tries to take into account the language issues and work around them as much as possible. It sounds though as if your mother may have quite severe cognitive and behavioural symptoms, which might make diagnosis easier in some respects (symptoms easier to detect) but also more challenging if she lacks insight into her condition and thus sees no reason to see the doctor.

For more on talking to someone about their problems with memory and thinking, including when they don’t want to see the doctor, I’d recommend taking a look at our webpage on the topic.

If all else fails, it is sometimes possible to get a provisional diagnosis done by a clinician who comes to your home and talks to you and your mother – particularly in situations such as this where the person lacks insight and their symptoms have become more severe. It may not be quite as reliable as a fully memory service assessment with brain scans, etc, but it will at least open up sources of dementia support for you.

Lastly, I don’t know much about Somerset I’m afraid, but it’s possible that there may be a Greek-speaking clinician who works in one of the memory services (or Older People’s Mental Health services more broadly) who might be able to carry out an assessment in Greek, which would obviously make things a lot easier and more reliable.

Unfortunately there’s generally no official register of languages spoken by NHS staff, so my approach would be to literally just ask around those services within a reasonable distance to see if they might be able to help. You may get lucky! Otherwise the next best thing would probably be a home-based assessment with you as a translator (and make sure they talk to you too).

Best wishes,

Simon
 
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