Does anyone else feel that dementia patients are seriously discriminated against

[deepetshopboy]

Just that really
I feel constantly annoyed and disappointed with the general attitude of the medical profession and drs social workers but mainly health care ie drs memory clinic
The ignorance is outstanding the patronising attitude they have at times over the course of two yrs ive had soo many conversations and ive had to bite my tongue many times ive been so annoyed disheartened by it all i truly believe that pwd are the very last of people to be openly disregarded in society im very sure im not the one that thinks im right with this
Ive nothing to compere it with as im not disabled or have a disabled child etc im sure they get discriminated against too the only thing ive got to compere it with is being a teenage mu.m in early 80s and nurses not being very nice to me
Looking after my dad has been a real eye opener in many ways
Sorry if i posted in wrong place ..?

 

[Lawson58]

I can't honestly say that there has been any discrimination against my husband or me as his carer and we are now into almost seven years since his diagnosis.

Occasionally, when a health professional sees Alzheimer's written on his history, they assume that he has lost capacity or that he is incapable of communicating so they automatically turn to me for information.

I think that their intentions are good and that they are trying to be helpful and efficient but that they also tend to think that all Alzheimer/dementia patients are at the advanced stages of disease because that is the common perception.

I always let my husband go into some appointments on his own - podiatry, dentist etc and others, I will sit to one side and only comment if necessary.

When he sees the geriatrician for his six monthly review, I spend time with the consultant while my husband is being tested, talking about his progress. After a brief chat with my husband, he usually brings the conversation around to football, British and Australian Rules and uses this to gauge things like lucidity and communication skills.

One of the GPS at our clinic will always tell my husband that she wants him to explain his concerns but that she will check with me to make sure he hasn't left anything out.

It may well be that mostly we see the same doctors, pharmacy and are now on first name terms with them and their staff but he has also been treated with kindness and respect at visits to emergency.

I am sorry that this has been your experience but I guess Covid has been a factor in what is happening to you.

 

[marionq]

I found that medical people always asked John if it would be OK to speak to me about how he was doing . He was happy to agree. It saved him trying to make sense of what was going on. On the whole he was very well treated by all public figures.

 

[deepetshopboy]

I found that medical people always asked John if it would be OK to speak to me about how he was doing . He was happy to agree. It saved him trying to make sense of what was going on. On the whole he was very well treated by all public figures.

Oh really thats good you had a positive experience maybe its a city thing as drs medical staff all overwhelmed
Ive had some nice drs but more bad then good to be honest

 

[jennifer1967]

i live in a city and other than being patronizing sometimes or give my husband over complicated instructions [physio] they are usually ok but will ask him then look at me if i can supply any more details. he will actually say ask them to talk to me. we have more of a problem with the age gap we have. we usually get the look or they flounder around trying to work out the relationship. i usually get is this your dad? which is prejudice on its own without the problems with dementia

 

[Spamar]

I never noticed OH was discriminated against, but I, as disabled, most certainly have been and all because of COVID restrictions! Still fuming!

 

[jennifer1967]

i get it because im housebound and there are very few services who cater for people like me and even groups are too long and i cant sit for that amount of time but need to keep moving. its not that i cant walk but the chronic pain i get when ive been out that its not worth going through 3 days of agony.

 

[DreamsAreReal]

I don’t know if I’d call it discrimination, but there seems to be a general lack of compassion or understanding, sometimes. Also, the treatment of advanced dementia care as a social problem rather than an illness, purely on economic grounds. I do think the elderly in general get poor treatment compared to other groups. Medical science has given us a longer lifespan, but at what cost to quality of life? Jmho

OP, I think the answer to your question will vary with location and also with expectations!

 

[Kay111]

100% agree with what you've just said @DreamsAreReal .

 

[Ramblingrose]

I can honestly say that since my mum was diagnosed some years ago there has been no support at all from the GP and social services. It seems it is the luck of the draw as to how people with dementia are treated or not as the case may be. I hear of other people having visits from different nurses and health visitors. I know that the GP doesn't have a dedicated mental heath nurse. So we struggle on.

 

[Countryboy]

No ever since my Diagnoses I received 100% excellent support from GP’s Consultant OT’s Memory Clinics

however I couldn’t say that about bureaucrats or general public you find loads of discrimination then. well that's if you allow that to happen or let them get away with it fortunately I am very strong willed person and definitely I don’t take prisoner’s and I’m certainly not political correct if they mess with me they will be in for a hard battle that for sure.

 

[Canadian Joanne]

I feel it is more a matter of ignorance and misinformation. Once my mother was diagnosed, I kept getting asked if she still knew me. This drove me mad. For the record, she knew me for another 10 years.

 

[DennyD]

Same here as Ramblingrose
GP visited husband once since diagnosis, 6 years ago, and that was because of a crisis. I think it's mainly to do with the systems in place, there is great disparity and perhaps services are simply overwhelmed. It does make me feel that we have the accept the most common denominator otherwise the system can't cope. I requested a discharge report to be amended because I was not happy with what was noted, this was agreed and promised a new copy would be sent - 4 weeks later and after several reminders still waiting. Suddenly found out that in one week, social worker is no longer social worker, discharge nurse has been moved on, care home assessmen,t visits arranged without telling me, new social worker no understanding of the situation, still awaiting financial assessment, new support work not knowing of my husband's likes/dislikes etc etc, all this in the last 4 weeks. In the meantime I receive a call from local pharmacy because I had not collected meds. Turns out drugs for dementia team had not stopped the repeat script despite husband being in emergency care since 21 December!

So yes deepetshopboy I feel I could join you!

​

 

[deepetshopboy]

Same here as Ramblingrose
GP visited husband once since diagnosis, 6 years ago, and that was because of a crisis. I think it's mainly to do with the systems in place, there is great disparity and perhaps services are simply overwhelmed. It does make me feel that we have the accept the most common denominator otherwise the system can't cope. I requested a discharge report to be amended because I was not happy with what was noted, this was agreed and promised a new copy would be sent - 4 weeks later and after several reminders still waiting. Suddenly found out that in one week, social worker is no longer social worker, discharge nurse has been moved on, care home assessmen,t visits arranged without telling me, new social worker no understanding of the situation, still awaiting financial assessment, new support work not knowing of my husband's likes/dislikes etc etc, all this in the last 4 weeks. In the meantime I receive a call from local pharmacy because I had not collected meds. Turns out drugs for dementia team had not stopped the repeat script despite husband being in emergency care since 21 December!

So yes deepetshopboy I feel I could join you!

​

This is a typical week for me dealing with ny dads illness I feel like im constantly doing the drs social worker job for them suggesting things emailing following things up chasing up things that dr or social worker was meant to do just adds more on top of what i have already got to do ! the most annoying thing is they tell me do this do that but dont do what they said there going do !
For instance had a meeting in feb with /dr sw /nurse
Sw was to assess him for finiace carers assesment on me she did that within 2 weeks of meeting as per instructed but then sent wrong forms to me and i never got my carers assesment money that was awarded as social worker didn’t send forms back or verify
She was also meant to contact day centre to enquire about my dad going never did that nurse said to me did i enquire about day centre i told him no sw was to do that
Was also meant to refer him to oc but then she cancelled it when i told her i bought seat didnt ask her to cancel oc visit
Dad went missing nov last yr when police bought him bck had frostbite on feet in dreadful state drs at the time whos still in the practice and has been for 15 yrs was unsympathetic and gave out wrong advice never botherd to come out and check him or could have sent a district nurse didnt said he couldn’t be seen by home treatment team emergency mental health team ( me n my son had to barricade us all in as my dad was kicking off having a mental meltdown) said cannot give antipsychotic anymore he must’ve known that you can do both even had the cheek to say to me well your not a trained carer is some dementia people discriminated against hell yes this is just tip of iceberg ive got more stories unfortunately from my experience

 

[Palerider]

Just that really
I feel constantly annoyed and disappointed with the general attitude of the medical profession and drs social workers but mainly health care ie drs memory clinic
The ignorance is outstanding the patronising attitude they have at times over the course of two yrs ive had soo many conversations and ive had to bite my tongue many times ive been so annoyed disheartened by it all i truly believe that pwd are the very last of people to be openly disregarded in society im very sure im not the one that thinks im right with this
Ive nothing to compere it with as im not disabled or have a disabled child etc im sure they get discriminated against too the only thing ive got to compere it with is being a teenage mu.m in early 80s and nurses not being very nice to me
Looking after my dad has been a real eye opener in many ways
Sorry if i posted in wrong place ..?

There is a long way to go in addressing the issues of discrimination against those with dementia, and on this journey my eyes have been opened all round. Its not just the start of the journey, but the whole journey -for some its straught forward and for others it becomes a constant battle to get the right support not just care at the right time in the right place.

 

[RosettaT]

My OH at home has me to fight for him, so in all honesty I can't say he suffers from lack of care or understanding from his doctors or consultants.
However in hospital, I wouldn't say he was discriminated against, but I was aghast at the lack of understanding of his condition. Time and time again they would leave his meals or drink on the table and out of reach and time and again I had to point out he couldn't feed himself. They were so concerned they raised a chart to monitor his intake and then failed to fill it in!
I just can't understand how someone whose brain doesn't function in the way it should, cure or not can be deemed a 'social' problem and left with such little support in so many cases.

 

[jennifer1967]

there is a lack of understanding as dementia is not indepth enough or different dementias not known enough about. when my nan was in hospital, i did her mouth care. she had decided , by pulling the drip out, she didnt want fluids but her mouth wasnt cleaned so i did it. i was there every day and another patient was falling out of bed and my nans notes were laying around on the reception. no confidentiality. i had to tell them.

 

[MaNaAk]

In our case some members of the general public were totally ignorant.

MaNaAk

 

[deepetshopboy]

I can't honestly say that there has been any discrimination against my husband or me as his carer and we are now into almost seven years since his diagnosis.

Occasionally, when a health professional sees Alzheimer's written on his history, they assume that he has lost capacity or that he is incapable of communicating so they automatically turn to me for information.

I think that their intentions are good and that they are trying to be helpful and efficient but that they also tend to think that all Alzheimer/dementia patients are at the advanced stages of disease because that is the common perception.

I always let my husband go into some appointments on his own - podiatry, dentist etc and others, I will sit to one side and only comment if necessary.

When he sees the geriatrician for his six monthly review, I spend time with the consultant while my husband is being tested, talking about his progress. After a brief chat with my husband, he usually brings the conversation around to football, British and Australian Rules and uses this to gauge things like lucidity and communication skills.

One of the GPS at our clinic will always tell my husband that she wants him to explain his concerns but that she will check with me to make sure he hasn't left anything out.

It may well be that mostly we see the same doctors, pharmacy and are now on first name terms with them and their staff but he has also been treated with kindness and respect at visits to emergency.

I am sorry that this has been your experience but I guess Covid has been a factor in what is happening to you.

No unfortunately this was happening before covid and after in fact id say slightly better since lockdown as people seem to have developed a bit of compassion

 

[deepetshopboy]

My OH at home has me to fight for him, so in all honesty I can't say he suffers from lack of care or understanding from his doctors or consultants.
However in hospital, I wouldn't say he was discriminated against, but I was aghast at the lack of understanding of his condition. Time and time again they would leave his meals or drink on the table and out of reach and time and again I had to point out he couldn't feed himself. They were so concerned they raised a chart to monitor his intake and then failed to fill it in!
I just can't understand how someone whose brain doesn't function in the way it should, cure or not can be deemed a 'social' problem and left with such little support in so many cases.

I fight for my dad as i feel i have to be hes voicebox , he’s bodyguard and hes advocate i will continue to fight injustice on hes behalf but should not be this way especially if the actual person or authority is being paid to help pws or is supposly trained in that field !