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Why are carers left with ALL the responsibility and left having to look/ask for everything?

LucyEllen

New member
Oct 21, 2018
2
0
When my husband was diagnosed with mixed dementia in October 2017 we had a few further appointments with the psychiatrist to check that he was okay with the medication, and he was then discharged. It was like being dropped off a cliff edge and left to sink or swim - for both of us. I've still not recovered from the shock and the complete lack of follow-up care/reviews/support of any kind. This would be unthinkable for most (if not all other) serious/terminal illnesses such as cancer.
My husband also has diabetes for which he has six-monthly reviews with a consultant. He also had heart by-pass surgery a few years ago and that came with a lot of pre and post op appointments including exercise classes. I'm fairly sure these were lobbied for by Diabetes UK and the BHF.
Yet for dementia, nothing.
Why can't there be, at least, an annual review of some kind for all dementia patients ... not necessarily a memory assessment; even a mobility/fall-prevention assessment with a occupational therapist would be good? Such a review would also be good for (supportive of) me as a carer. Why do we have to wait for the fall? Why are carers left with ALL the responsibility and left having to look/ask for everything?
 

Louise7

Volunteer Host
Mar 25, 2016
2,989
0
Hello @LucyEllen and welcome to Dementia Talking Point which is a friendly and supportive community. I understand your frustration at the lack of follow-up action/support after a diagnosis - when my mum was diagnosed it was a case of a couple of appointments with the memory clinic, a prescription for medication and a few leaflets and that was essentially that. Caring for someone with dementia is hard, and there is support available, but as you and many others here have discovered, it's usually a case of having to ask for it rather than it being offered. There do seem to be regional variations in relation to what is available but I found this forum to be a real lifeline as it's 'open' 24hrs and there are so many people here that have been through the same things and experienced the same problems/issues and are happy to offer advice and support to others, and it's a safe place to 'vent' too if you need to. Just knowing that you are not alone can make a real difference so I hope that you will continue to post here. The Dementia Connect service is also available if you want to speak to someone in real time, and they will be able to point you in the direction of local support services too: https://www.alzheimers.org.uk/dementiaconnect
 
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jennifer1967

Registered User
Mar 15, 2020
3,140
0
Southampton
we went to the memory clinic, had tests, already had MRI because he wobbled when he walked. never seen a consultant and the nurse told me on the phone. as he has vascular dementia, there is no tablets for it. other than that, nothing. the alz. soc. local dementia navigator has done all the things that was needed especially putting us in touch with all the different voluntary groups and chased things up especially when i had my own health worries. TP has taught me what i needed and how to get it. without them, i would have struggled. my gp is good and sorts things as they come up. it all happened in the first lock down so now groups etc and as im housebound thats not going to be open to me.
 

DennyD

Registered User
Dec 6, 2016
181
0
Porthcawl, South Wales
I've been thinking about this question. Such a difficult one to answer, there is as said, much variation across country. Is there a national strategy? The value of the carer is described at length in strategies and policies - triangle of care to name but one. However, in reality the experiences of carers shows otherwise, both in the support for carers as well as the support available to those with dementia. Why? I don't know, is it the illness, is it the way care for dementia is funded, is it because there is no agreement who has responsibility? I fear in part it comes down to finances. Equally I think it has to do with the dedication, priorities and professional standards in local areas. As with other ailments some receive efficient and dedicated attention, with others you wonder whether the practitioner has a clue what they are talking about.
 

canary

Registered User
Feb 25, 2014
14,915
0
South coast
I think a lot of the problem is that there is no treatment for dementia and the medical proffession doesnt do well when they cant treat something.
Things like cancer, diabeties and heart problems all have treatment, but with dementia there is none.

It is becomeing harder and haerder to get OH to appointments, so if I take him somewhere I want that appointment to count. I dont want to go to all the hassle of getting him out on time, and to an appointment only to be told, yes its getting worse, but there isnt anything we can do. Even things like physiothereapy appointments are a waste offd time as he cannot folllow instructions now.
 

JC51

Registered User
Jan 5, 2021
112
0
Then when the person being cared for 24/7 for free by a loved one, finds they cannot cope and their health starts to suffer, and a care home is the next option, only to find the extortionate fees per week they will be charged. It's a disgrace anyone should have to worry about losing a property or all their savings. If you've worked all your life, paid National Insurance all your life, it should be free. Sorry, but I just had to let my feelings flow.
 
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AbbyGee

Registered User
Nov 26, 2018
195
0
Portsmouth, South Coast
After formal diagnosis early in 2019, we had a couple of visits to check meds were 'doing OK' then 2020 lockdown left us dead in the water.
I feel alone. I am trying my best. It's not enough. I appreciate the situation but hell's bells ... I'm sinking. My brain is fried. I can't sleep but my waking life is like walking through treacle.
I'm struggling with the day to day stuff, the piddle on the bathroom floor, trying to get the man to change his underwear, the hygiene issues of sticky vests and sweaty PJs, the ever repeated questions, the stumbling bumbling old geezer who's taken the place of my special person. I can't even go to the kitchen to make a pot of tea without being followed. Even my bathroom/loo visits are ... foreshortened by the call of he from a distance.
I feel like my life has ended and this is it forever. And I feel angry. So angry. And so selfish for feeling angry. And so angry for feeling selfish.
 

PalSal

Registered User
Dec 4, 2011
951
0
Pratteln Switzerland
I think a lot of the problem is that there is no treatment for dementia and the medical proffession doesnt do well when they cant treat something.
Things like cancer, diabeties and heart problems all have treatment, but with dementia there is none.

It is becomeing harder and haerder to get OH to appointments, so if I take him somewhere I want that appointment to count. I dont want to go to all the hassle of getting him out on time, and to an appointment only to be told, yes its getting worse, but there isnt anything we can do. Even things like physiothereapy appointments are a waste offd time as he cannot folllow instructions now.
I am in agreement with Canary. Nick was diagnosed at 49 years of age, 19 years ago. As we live here in Basel Switzerland and I worked for Novartis, I was able in the early years to get him on two drug trials neither drug was brought to market.
In the early years, after his diagnosis, I was hopeful. But in all the time, since his diagnosis there has not been one new drug brought to market. It is discouraging. I told people after a few years to quit sending me "breakthrough" press information on early stage development and hopeful "cures". I still hope that at some point in time, researchers will find the silver bullet, but it could no longer repair the extensive damage to Nick's brain.
I fear that with COVID and cancer, the disease is low on the priority. Focus is elsewhere and it is a complicated disease with multiple genes which could perhaps cause or lead to onset. It seems so little is known or clear about the disease.
 

kindred

Registered User
Apr 8, 2018
2,616
0
After formal diagnosis early in 2019, we had a couple of visits to check meds were 'doing OK' then 2020 lockdown left us dead in the water.
I feel alone. I am trying my best. It's not enough. I appreciate the situation but hell's bells ... I'm sinking. My brain is fried. I can't sleep but my waking life is like walking through treacle.
I'm struggling with the day to day stuff, the piddle on the bathroom floor, trying to get the man to change his underwear, the hygiene issues of sticky vests and sweaty PJs, the ever repeated questions, the stumbling bumbling old geezer who's taken the place of my special person. I can't even go to the kitchen to make a pot of tea without being followed. Even my bathroom/loo visits are ... foreshortened by the call of he from a distance.
I feel like my life has ended and this is it forever. And I feel angry. So angry. And so selfish for feeling angry. And so angry for feeling selfish.
I am so sorry. Not alone, you have us. This forum got me through. We know. For two years I didn’t even manage to sit down in the bath, wasn’t worth it as would be shouted at. I felt a prisoner and a slave. It did end in the train crash way my go predicted. But not good to be waiting for an accident.
All sympathy. Thank goodness for this forum. Keep posting. Warmest, kindred
 

kindred

Registered User
Apr 8, 2018
2,616
0
Then when the person being cared for 24/7 for free by a loved one, finds they cannot cope and their health starts to suffer, and a care home is the next option, only to find the extortionate fees per week they will be charged. It's a disgrace anyone should have to worry about losing a property or all their savings. If you've worked all your life, paid National Insurance all your life, it should be free. Sorry, but I just had to let my feelings flow.
Yes, the fees are eye watering. Awful. after the years we put in free care. I was glad not to have to lose my home.
I so agree. Warmest kindred
 

RosettaT

Registered User
Sep 9, 2018
561
0
Mid Lincs
My OH was diagnosed in 2017. He saw the consultant at that point then 6 mths later to check his meds were OK. He was then discharged and I remember feeling so alone. However after a year we did have another med review, over and above the yearly one by the doctors, and that has continued annually. In fairness it's more than useless because the answer is always, 'it's a progression of the disease, nothing we can do'.
And in truth that is correct. I can't see anything being a help other than someone living my wardrobe who I can call on to give me a hand when one is needed.
OH is also self funding and whilst I have no problem with paying towards the help he needs, I do believe there should be a minimum of 2 hours free respite a month for everyone. It certainly takes the shine off having my hair done when we have to cough up another £50 on top of a cut and blow dry.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,088
0
Yorkshire
hi @JC51 and @kindred
just to be clear that the marital home is not at risk when a spouse moves into residential care (from main AS site):

your home will not be taken into account if one of the following people also lives in the property, and will continue to live there after you have moved into a care home:

  • a husband, wife or civil partner
  • a close relative over the age of 60
  • a dependent child
  • a relative who is disabled or incapacitated.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,347
0
High Peak
After formal diagnosis early in 2019, we had a couple of visits to check meds were 'doing OK' then 2020 lockdown left us dead in the water.
I feel alone. I am trying my best. It's not enough. I appreciate the situation but hell's bells ... I'm sinking. My brain is fried. I can't sleep but my waking life is like walking through treacle.
I'm struggling with the day to day stuff, the piddle on the bathroom floor, trying to get the man to change his underwear, the hygiene issues of sticky vests and sweaty PJs, the ever repeated questions, the stumbling bumbling old geezer who's taken the place of my special person. I can't even go to the kitchen to make a pot of tea without being followed. Even my bathroom/loo visits are ... foreshortened by the call of he from a distance.
I feel like my life has ended and this is it forever. And I feel angry. So angry. And so selfish for feeling angry. And so angry for feeling selfish.
This was how I felt and I had it far, far easier as I wasn't doing 'hands-on' caring. My mother went from being 'somewhat worrying' but living independently to needing 24/7 care overnight as she had a fall, ended up in hospital and suffered a dramatic decline. I knew from that point it was down to me to ensure her needs were met, to visit and take care of all her affairs. As we'd never had a good relationship, this was difficult and - to be honest - not something I wanted to do. But my brother wasn't going to step up so it all fell to me and yes, I felt very resentful because mum had never helped me when I needed it.

I got NO help from anyone. As mum was undiagnosed, I had to sort everything out myself - not easy as she lived a distance away and I have no transport. And I had zero knowledge of 'the system' then. I moved her to a care home, she was diagnosed by a consultant who visited about 6 months later and that was that. No meds were offered - the consultant didn't even mention the possibility, which could be because she had mixed dementia (Alz + VD) or perhaps because he thought she was already past the stage where meds would help.

After that, mum had an annual visit from the GP. That was it. He'd say, 'she's getting worse, isn't she?' Well, no **** Sherlock. The consultant never saw her again, no memory clinic, further asessments, psychiatric nurse, no nothing.

The jaded part of me says that because mum was self funding and already in a care home, the medical profession (and associated social care services) felt there was nothing more to be done. But I felt completely on my own and that nobody cared about her. Fortunately, I'd already found TP....
 

Countryboy

Registered User
Mar 17, 2005
1,578
0
South West
Negative Thinking Can Harm Your Brain and Increase Your Dementia Risk
Dr Marchant believes that cognitive debt is linked to repetitive negative thinking, where someone often worries or ruminates on negative experiences or thoughts. Repeated negative thinking may lead to an inability to properly cope with stress, increasing a person's risk of dementia.

Positive thinking could help fight dementia risk

IGlobal Desk

Published on : 16 Jun, 2020 , 7:35 am

A new University College London (UCL) led study has found out that persistently engaging in negative thinking patterns may raise the risk of Alzheimer's disease.

In the study of people aged over 55, published in 'Alzheimer's & Dementia', researchers found “repetitive negative thinking” (RNT) is linked to subsequent cognitive decline as well as the deposition of harmful brain proteins linked to Alzheimer's. The researchers say RNT should now be further investigated as a potential risk factor for dementia, and psychological tools, such as mindfulness or meditation, should be studied to see if these could reduce dementia risk.

"Depression and anxiety in mid-life and old age are already known to be risk factors for dementia. Here, we found that certain thinking patterns implicated in depression and anxiety could be an underlying reason why people with those disorders are more likely to develop dementia," said lead author Dr Natalie Marchant, 'UCL Psychiatry'.

"Taken alongside other studies, which link depression and anxiety with dementia risk, we expect that chronic negative thinking patterns over a long period of time could increase the risk of dementia. We do not think the evidence suggests that short-term setbacks would increase one's risk of dementia," added Marchant.

"We hope that our findings could be used to develop strategies to lower people's risk of dementia by helping them to reduce their negative thinking patterns," said Marchant.

Cognitive function​

For the Alzheimer's Society-supported study, the research team from UCL, INSERM and McGill University studied 292 people over the age of 55 who were part of the PREVENT-AD cohort study, and a further 68 people from the IMAP+ cohort.

Over a period of two years, the study participants responded to questions about how they typically think about negative experiences, focusing on RNT patterns like rumination about the past and worry about the future. The participants also completed measures of depression and anxiety symptoms.

Their cognitive function was assessed, measuring memory, attention, spatial cognition, and language. Some (113) of the participants also underwent PET brain scans, measuring deposits of tau and amyloid, two proteins which cause the most common type of dementia, Alzheimer's disease, when they build up in the brain.

The researchers found that people who exhibited higher RNT patterns experienced more cognitive decline over a four-year period, and declines in memory (which is among the earlier signs of Alzheimer's disease), and they were more likely to have amyloid and tau deposits in their brain.

Depression and anxiety were associated with subsequent cognitive decline but not with either amyloid or tau deposition, suggesting that RNT could be the main reason why depression and anxiety contribute to Alzheimer's disease risk.

"We propose that repetitive negative thinking may be a new risk factor for dementia as it could contribute to dementia in a unique way," said Dr Marchant.

Risk factors​

The researchers suggest that RNT may contribute to Alzheimer's risk via its impact on indicators of stress such as high blood pressure, as other studies have found that physiological stress can contribute to amyloid and tau deposition.

"Our thoughts can have a biological impact on our physical health, which might be positive or negative. Mental training practices such as meditation might help promoting positive- while down-regulating negative-associated mental schemes," said Co-author Dr Gael Chetelat (INSERM and Universite de Caen-Normandie).

"Looking after your mental health is important, and it should be a major public health priority, as it's not only important for people's health and well-being in the short term, but it could also impact your eventual risk of dementia," added Chetelat.

The researchers hope to find out if reducing RNT, possibly through mindfulness training or targeted talk therapy, could in turn reduce the risk of dementia.

Dr Marchant and Dr Chetelat and other European researchers are currently working on a large project to see if interventions such as meditation may help reduce dementia risk by supporting mental health in old age
 

JC51

Registered User
Jan 5, 2021
112
0
hi @JC51 and @kindred
just to be clear that the marital home is not at risk when a spouse moves into residential care (from main AS site):

your home will not be taken into account if one of the following people also lives in the property, and will continue to live there after you have moved into a care home:

  • a husband, wife or civil partner
  • a close relative over the age of 60
  • a dependent child
  • a relative who is disabled or incapacitated.
Thanks for that, I think we are both aware you don't lose your home if one of you still lives there, but if only one person lives there they could.
 

Sandy 23

New member
Mar 7, 2021
4
0
When my husband was diagnosed with mixed dementia in October 2017 we had a few further appointments with the psychiatrist to check that he was okay with the medication, and he was then discharged. It was like being dropped off a cliff edge and left to sink or swim - for both of us. I've still not recovered from the shock and the complete lack of follow-up care/reviews/support of any kind. This would be unthinkable for most (if not all other) serious/terminal illnesses such as cancer.
My husband also has diabetes for which he has six-monthly reviews with a consultant. He also had heart by-pass surgery a few years ago and that came with a lot of pre and post op appointments including exercise classes. I'm fairly sure these were lobbied for by Diabetes UK and the BHF.
Yet for dementia, nothing.
Why can't there be, at least, an annual review of some kind for all dementia patients ... not necessarily a memory assessment; even a mobility/fall-prevention assessment with a occupational therapist would be good? Such a review would also be good for (supportive of) me as a carer. Why do we have to wait for the fall? Why are carers left with ALL the responsibility and left having to look/ask for everything?
 

Agzy

Registered User
Nov 16, 2016
1,920
0
Moreton, Wirral. UK.
I haven’t heard a single one of us report positively about after diagnosis follow up support or help other than the voluntary sector. Given the way politicians and health care professionals insist that dementia is the biggest crisis facing the NHS, and having made positive comments and empty promises to the media, it is shameful they just disappear and nothing but nothing is seemingly done to improve at home care or tangible support for at home carers.
 

lollyc

Registered User
Sep 9, 2020
206
0
Negative Thinking Can Harm Your Brain and Increase Your Dementia Risk
Dr Marchant believes that cognitive debt is linked to repetitive negative thinking, where someone often worries or ruminates on negative experiences or thoughts. Repeated negative thinking may lead to an inability to properly cope with stress, increasing a person's risk of dementia.

Positive thinking could help fight dementia risk

IGlobal Desk

Published on : 16 Jun, 2020 , 7:35 am

A new University College London (UCL) led study has found out that persistently engaging in negative thinking patterns may raise the risk of Alzheimer's disease.

In the study of people aged over 55, published in 'Alzheimer's & Dementia', researchers found “repetitive negative thinking” (RNT) is linked to subsequent cognitive decline as well as the deposition of harmful brain proteins linked to Alzheimer's. The researchers say RNT should now be further investigated as a potential risk factor for dementia, and psychological tools, such as mindfulness or meditation, should be studied to see if these could reduce dementia risk.

"Depression and anxiety in mid-life and old age are already known to be risk factors for dementia. Here, we found that certain thinking patterns implicated in depression and anxiety could be an underlying reason why people with those disorders are more likely to develop dementia," said lead author Dr Natalie Marchant, 'UCL Psychiatry'.

"Taken alongside other studies, which link depression and anxiety with dementia risk, we expect that chronic negative thinking patterns over a long period of time could increase the risk of dementia. We do not think the evidence suggests that short-term setbacks would increase one's risk of dementia," added Marchant.

"We hope that our findings could be used to develop strategies to lower people's risk of dementia by helping them to reduce their negative thinking patterns," said Marchant.

Cognitive function​

For the Alzheimer's Society-supported study, the research team from UCL, INSERM and McGill University studied 292 people over the age of 55 who were part of the PREVENT-AD cohort study, and a further 68 people from the IMAP+ cohort.

Over a period of two years, the study participants responded to questions about how they typically think about negative experiences, focusing on RNT patterns like rumination about the past and worry about the future. The participants also completed measures of depression and anxiety symptoms.

Their cognitive function was assessed, measuring memory, attention, spatial cognition, and language. Some (113) of the participants also underwent PET brain scans, measuring deposits of tau and amyloid, two proteins which cause the most common type of dementia, Alzheimer's disease, when they build up in the brain.

The researchers found that people who exhibited higher RNT patterns experienced more cognitive decline over a four-year period, and declines in memory (which is among the earlier signs of Alzheimer's disease), and they were more likely to have amyloid and tau deposits in their brain.

Depression and anxiety were associated with subsequent cognitive decline but not with either amyloid or tau deposition, suggesting that RNT could be the main reason why depression and anxiety contribute to Alzheimer's disease risk.

"We propose that repetitive negative thinking may be a new risk factor for dementia as it could contribute to dementia in a unique way," said Dr Marchant.

Risk factors​

The researchers suggest that RNT may contribute to Alzheimer's risk via its impact on indicators of stress such as high blood pressure, as other studies have found that physiological stress can contribute to amyloid and tau deposition.

"Our thoughts can have a biological impact on our physical health, which might be positive or negative. Mental training practices such as meditation might help promoting positive- while down-regulating negative-associated mental schemes," said Co-author Dr Gael Chetelat (INSERM and Universite de Caen-Normandie).

"Looking after your mental health is important, and it should be a major public health priority, as it's not only important for people's health and well-being in the short term, but it could also impact your eventual risk of dementia," added Chetelat.

The researchers hope to find out if reducing RNT, possibly through mindfulness training or targeted talk therapy, could in turn reduce the risk of dementia.

Dr Marchant and Dr Chetelat and other European researchers are currently working on a large project to see if interventions such as meditation may help reduce dementia risk by supporting mental health in old age
The problem is:
I am depressed, because my mother has dementia.
I am depressed, because I care for my mother with dementia.
I am depressed, because there is so little proper, practical support for people with dementia, and their carers.
And now I am depressed, because the depression is likely to cause me to develop dementia too.
Great, as if I didn't have enough to worry about!
 

None the Wiser

Registered User
Feb 3, 2020
190
0
I know that this thread is somewhat negative but what is written is each person‘s reality, and much of it has the common theme of being left to cope alone with little or no help until crisis point is reached, and even then the form of ‘help’ may be inappropriate or unsatisfactory. It is useful for me to hear about other people‘s struggles as I worry that I am alone in not really coping very well, and in having some quite negative thoughts.
At present I am thoroughly ‘fed up’ with having to complete endless forms ( all asking for the same information, or very similar), or have long telephone conversations with really kind professionals that result in very little immediate change.