Mother's doctor won't help (as much aas we'd like)

[Almofro]

Hi -- My 73 year-old mother has had memory problems for at least three years, and it was only last year we (myself and my sister) finally managed to persuade her to see the doctor. She won't go with us, but she does go with my father. She had a series of blood tests last year, although trying to get information out of either of my parents is pretty difficult -- my father just tells us not to worry, and he'll look after her. But we were concerned that nothing was being done to test her cognitive abilities, so towards the end of the year my sister and I emailed our mother's GP setting out a pretty extensive list of symptoms as we have observed them. These include very evident memory loss issues -- repeating herself 5 times in a 15-minute conversation, not remembering how to use a rail ticket at a ticket barrier, becoming increasingly obsessive about her pet cats, and hoarding things including pebbles from the driveway. The GP obviously can't talk to us about our mother because she hasn't signed a disclaimer allowing him to do so. But he mentioned our email to our father the next time he took my mother to the GP, and then offered her memory classes. These are a faff to get to and so my mother refused. My concern is that he's not actually offered her any formal cognition tests, and my worry is that if she does have some form of dementia, he's just trying to avoid prescribing expensive drugs. My sister and I have read that there are treatments that can slow down the process, and we're really concerned that she needs to get this the soonest. And we have no idea what could explain her symptoms other than a form of dementia. But the GP doesn't seem willing to perform the needed tests.
What course of action could we take, and are we overreacting? It's very distressing every time I see her in a confused state -- although I do my best to act calmly and if she asks me the same question 5 times, I answer 5 times as if it were the first time she'd asked.

Many thanks

 

[canary]

Hello @Almofro and welcome to talking Point.

Are you sure the GP said he was referring her to memory classes and not the Memory Clinic? Its the Memory Clinic that organises the tests, makes the diagnosis of dementia and prescribes drugs.

BTW, there is very little in the way of treatment for dementia. If it turns out that she has Alzheimers dementia then there are a couple of drugs which will slow down the progression (not cure, not halt the progression), although they dont always work and some people cannot tolerate them. If it is any other type of dementia then Im afraid that there is nothing that will slow it down, although there may be drugs which may help some of the symptoms

 

[Sirena]

GPs are paid £150 for each patient they diagnose and treat for dementia, so I doubt he is reluctant to make a diagnosis. I can understand that you want to feel something is 'being done' to help but I think you might be over optimistic about the effect of treatment, which is only available for certain types of dementia, and not suitable for all patients. My mother has Alzheimers and there are two types of medication available, but despite a fairly early diagnosis and multiple trips to the memory clinic, she was given neither.

You don't know what has happened at the GP appointments, you only get that version which your parents give you, so more tests may have been offered which were refused. It is common for the spouse to want to protect the person with dementia, which is why your father tells you not to worry. Make sure he knows that you are there if they need help or support, but let them decide what they want to do about it. And if the answer to that is 'very little', that is their decision.

 

[tarakins]

I come from a large family and we all noticed my mum's deterioration over the past couple of years. We think dad is also starting with early stages. Dad and one other family member totally disregarded our concerns and hid appointments to memory clinic and even hid the fact that she was diagnosed with Dementia from us all. The GP was informed on a couple of occasions over the two years but didn't seem to act upon the information and memory clinic was contacted by the Lasting Power of Attorney to raise concerns and ask about capacity and was told there was an alert on the notes and they immediately informed my parents of the phone call!!! It seems that medical professionals are more concerned with what the patient demands rather than listening and acting upon worried families concerns, even safeguarding concerns. I'm sorry to say but I think you are in for a difficult time. Even a Lasting Power of Attorney cant get any feedback from medical professionals, we are all flabbergasted.

 

[Beate]

A GP wouldn't make that diagnosis themselves - they would do a referral to the Memory Clinic who'd do more in-depths tests before they diagnose - blood tests, memory tests and a brain scan. Then they prescribe the medication (if any) which the GP will continue, but with any change in medication it's best to go back to the specialist.

However, if your parents misheard and didn't want to go to those "memory classes", I don't see what the GP can do. Unfortunately a patient has a right to refuse investigations and medication, even when that is unwise.

 

[Louise7]

It seems that medical professionals are more concerned with what the patient demands rather than listening and acting upon worried families concerns, even safeguarding concerns. I'm sorry to say but I think you are in for a difficult time. Even a Lasting Power of Attorney cant get any feedback from medical professionals, we are all flabbergasted.

The problem is that a health & welfare POA can only be used when the individual is deemed to have lost capacity so medical professionals have to consider the wishes of the patient if they still have capacity. I have H&W POA and this was completely ignored by hospital staff despite them stating that Mum had lost capacity so having one in place isn't a guarantee that medical staff will actually listen to you!

 

[Rosettastone57]

Hi -- My 73 year-old mother has had memory problems for at least three years, and it was only last year we (myself and my sister) finally managed to persuade her to see the doctor. She won't go with us, but she does go with my father. She had a series of blood tests last year, although trying to get information out of either of my parents is pretty difficult -- my father just tells us not to worry, and he'll look after her. But we were concerned that nothing was being done to test her cognitive abilities, so towards the end of the year my sister and I emailed our mother's GP setting out a pretty extensive list of symptoms as we have observed them. These include very evident memory loss issues -- repeating herself 5 times in a 15-minute conversation, not remembering how to use a rail ticket at a ticket barrier, becoming increasingly obsessive about her pet cats, and hoarding things including pebbles from the driveway. The GP obviously can't talk to us about our mother because she hasn't signed a disclaimer allowing him to do so. But he mentioned our email to our father the next time he took my mother to the GP, and then offered her memory classes. These are a faff to get to and so my mother refused. My concern is that he's not actually offered her any formal cognition tests, and my worry is that if she does have some form of dementia, he's just trying to avoid prescribing expensive drugs. My sister and I have read that there are treatments that can slow down the process, and we're really concerned that she needs to get this the soonest. And we have no idea what could explain her symptoms other than a form of dementia. But the GP doesn't seem willing to perform the needed tests.
What course of action could we take, and are we overreacting? It's very distressing every time I see her in a confused state -- although I do my best to act calmly and if she asks me the same question 5 times, I answer 5 times as if it were the first time she'd asked.

Many thanks

Don't bank on any drugs being prescribed and as other posters have said the GP's are guided totally by the specialists at a memory clinic . When my mother-in-law was diagnosed with mixed dementia she was not offered any medication at all this was because her blood pressure issues would have meant any benefits would have put her at increased risks of a potential stroke . It's not unusual for patients to refuse to go to a memory clinic and not unusual for spouses to cover up any problems.. I appreciate it's a frustrating situation but sometimes you have to step back and let a crisis occur

 

[Almofro]

Hello @Almofro and welcome to talking Point.

Are you sure the GP said he was referring her to memory classes and not the Memory Clinic? Its the Memory Clinic that organises the tests, makes the diagnosis of dementia and prescribes drugs.

BTW, there is very little in the way of treatment for dementia. If it turns out that she has Alzheimers dementia then there are a couple of drugs which will slow down the progression (not cure, not halt the progression), although they dont always work and some people cannot tolerate them. If it is any other type of dementia then Im afraid that there is nothing that will slow it down, although there may be drugs which may help some of the symptoms

May thanks! It;s quite possible it IS the memory clinic. I will try to extract that information from my father!

 

[Almofro]

GPs are paid £150 for each patient they diagnose and treat for dementia, so I doubt he is reluctant to make a diagnosis. I can understand that you want to feel something is 'being done' to help but I think you might be over optimistic about the effect of treatment, which is only available for certain types of dementia, and not suitable for all patients. My mother has Alzheimers and there are two types of medication available, but despite a fairly early diagnosis and multiple trips to the memory clinic, she was given neither.

You don't know what has happened at the GP appointments, you only get that version which your parents give you, so more tests may have been offered which were refused. It is common for the spouse to want to protect the person with dementia, which is why your father tells you not to worry. Make sure he knows that you are there if they need help or support, but let them decide what they want to do about it. And if the answer to that is 'very little', that is their decision.

many thanks

 

[Almofro]

Hello @Almofro and welcome to talking Point.

Are you sure the GP said he was referring her to memory classes and not the Memory Clinic? Its the Memory Clinic that organises the tests, makes the diagnosis of dementia and prescribes drugs.

BTW, there is very little in the way of treatment for dementia. If it turns out that she has Alzheimers dementia then there are a couple of drugs which will slow down the progression (not cure, not halt the progression), although they dont always work and some people cannot tolerate them. If it is any other type of dementia then Im afraid that there is nothing that will slow it down, although there may be drugs which may help some of the symptoms

Don't bank on any drugs being prescribed and as other posters have said the GP's are guided totally by the specialists at a memory clinic . When my mother-in-law was diagnosed with mixed dementia she was not offered any medication at all this was because her blood pressure issues would have meant any benefits would have put her at increased risks of a potential stroke . It's not unusual for patients to refuse to go to a memory clinic and not unusual for spouses to cover up any problems.. I appreciate it's a frustrating situation but sometimes you have to step back and let a crisis occur

many thanks

 

[Almofro]

I come from a large family and we all noticed my mum's deterioration over the past couple of years. We think dad is also starting with early stages. Dad and one other family member totally disregarded our concerns and hid appointments to memory clinic and even hid the fact that she was diagnosed with Dementia from us all. The GP was informed on a couple of occasions over the two years but didn't seem to act upon the information and memory clinic was contacted by the Lasting Power of Attorney to raise concerns and ask about capacity and was told there was an alert on the notes and they immediately informed my parents of the phone call!!! It seems that medical professionals are more concerned with what the patient demands rather than listening and acting upon worried families concerns, even safeguarding concerns. I'm sorry to say but I think you are in for a difficult time. Even a Lasting Power of Attorney cant get any feedback from medical professionals, we are all flabbergasted.

many thanks!