Hi All, first time posting here. My mother has recently been diagnosed with middle stage dementia. She lives at home with my father who is also unwell and I live quite some distance from them. Although I am trying to do everything I can to help them both I feel they are getting next to no help from their local social services and NHS mental health team. The whole process from first going to see her GP to getting a scan took over 6 months. Then after getting the scan it was over two months before we got an appointment to get the results (the mental health nurse had not actioned anything despite the fact the scans were sat on her desk for a number of weeks). I think the person who gave the diagnosis was a psychiatrist, it was never really discussed what his qualifications area of expertise was. Didn't give a definitive diagnosis as to what type of dementia other than it was middle stage. Seemed like the first time ge had laid eyes on the scan results was when he called them up on his screen during the consultation. All they seem to be intent on doing is prescribing her anti-phychotic drugs (which is not what all the NICE guidelines say they should be doing as a 1st line of defence). When I have questioned this with them I am simply told not to believe everything I read in the press about anti-physchotics and who am I to question their judgement as to what drugs my mother should given. I am really at my wits end with worry and with Dad not being well to and trying to look after her on his own with zero support from their local health care team I really don't know what to do next. Would like a second opinion but who do you go to to get one? I feel like they have been completely abandoned by their local NHS. The last thing the apparent psychiatrist said to me before ending the consultation was either I give up everything to go live with my parents or they have to come live with me. Like they have done their part and now washed their hands of all responsibility. Not impressed what so ever.
Mum diagnosed with middle stage dementia
- Thread starter FreeRanger
- Start date
Hello @FreeRanger and welcome to Talking Point.
Im afraid that, as you have discovered, there is very little support for dementia. The same thing happened to mum. She had a scan, was diagnosed, prescribed donepezil and discharged. The only help I got was a handful of leaflets given to me at discharge. Fortunately, one of the leaflets was from the Alzheimers Society and I found my way here. The fact that there is so little support (and what there is you have to find yourself) has made this forum invaluable to me. It is a very knowledgeable community which offers a great deal of support.
I have no personal experience of anti-psychotics, but if you read around you will see that they are often used for extreme agitation and aggression. Im sure that someone who does have experience of them will be along.
Im afraid that, as you have discovered, there is very little support for dementia. The same thing happened to mum. She had a scan, was diagnosed, prescribed donepezil and discharged. The only help I got was a handful of leaflets given to me at discharge. Fortunately, one of the leaflets was from the Alzheimers Society and I found my way here. The fact that there is so little support (and what there is you have to find yourself) has made this forum invaluable to me. It is a very knowledgeable community which offers a great deal of support.
I have no personal experience of anti-psychotics, but if you read around you will see that they are often used for extreme agitation and aggression. Im sure that someone who does have experience of them will be along.
Wow. That 'apparent psychiatrist' has got a nerve! He could easily have said, 'They will both need 24/7 care very soon', but no - he chose to put it all on you!
As if you don't have enough to cope with without medics heaping the guilt on. I'm really sorry you were seen by such an insensitive, unthinking person
I've had my own experiences with The Arrogant Consultant. Long story short, but he was completely wrong, I was completely right, showing he'd been extremely remiss, if not negligent. But hey - he's a Big Important Person and knows everything, and who are we to question their ineffable wisdom, huh?
Sheesh.
As if you don't have enough to cope with without medics heaping the guilt on. I'm really sorry you were seen by such an insensitive, unthinking person
I've had my own experiences with The Arrogant Consultant. Long story short, but he was completely wrong, I was completely right, showing he'd been extremely remiss, if not negligent. But hey - he's a Big Important Person and knows everything, and who are we to question their ineffable wisdom, huh?
Sheesh.
Hi @FreeRanger and welcome from me too.
As @canary has said the NHS have little to offer with support when it comes to dementia. I also found the best place to get useful advice was here on the forum.
I haven't had any experience with anti-psycotics but others have and hopefully someone will be along soon who has.
As @canary has said the NHS have little to offer with support when it comes to dementia. I also found the best place to get useful advice was here on the forum.
I haven't had any experience with anti-psycotics but others have and hopefully someone will be along soon who has.
We have experience with anti - psychotics with MIL.
She was sectioned due to delirium and attacking paramedics/police and nurses.
When she went into the Dementia Unit at the local psychiatric hospital she was put onto Risperidone in increasing doses and also Citalopram to try to get on top of her symptoms. They had to add lorazepam as and when to the mix to get her stable. She did not appear 'drugged up' when we saw her and she was much more settled.
Over time - we are now talking 2 years down the line - she is on a reduced dose of Risperidone and the Citalopram but does not need Lorazepam now.
Drugs are only given as a last resort in the smallest dose possible for the shortest time possible.
It is distressing to realised that your loved one requires this sort of medication but , in our experience, sometimes it is for the best for them.
MIL is currently settled in the Nursing home.
Hope this help allay your fears somewhat.
She was sectioned due to delirium and attacking paramedics/police and nurses.
When she went into the Dementia Unit at the local psychiatric hospital she was put onto Risperidone in increasing doses and also Citalopram to try to get on top of her symptoms. They had to add lorazepam as and when to the mix to get her stable. She did not appear 'drugged up' when we saw her and she was much more settled.
Over time - we are now talking 2 years down the line - she is on a reduced dose of Risperidone and the Citalopram but does not need Lorazepam now.
Drugs are only given as a last resort in the smallest dose possible for the shortest time possible.
It is distressing to realised that your loved one requires this sort of medication but , in our experience, sometimes it is for the best for them.
MIL is currently settled in the Nursing home.
Hope this help allay your fears somewhat.
That psychiatrist's communication skills were awful. Unfortunately, there is no medication to cure or even slow the progress of dementia although there is medication to make the brain work a bit better with what it has and medication to deal with symptoms such as agitation, aggression and hallucinations. Many people feel that the medical profession washes its hands off a PWD once the diagnosis has been made. I am no expert on anti-psychotics but I do not think that they are prescribed routinely for dementia. Does your mother suffer from extreme agitation or hallucinations?
I think that you need to focus on getting in care for your parents (assuming that this is not already in place). SS can carry out a needs assessment if you're not sure what they need. If your parents will be funding their care then you can just go ahead and arrange this without reference to SS. Care agencies which provide personal care are regulated by the CQC. Your mother should be entitled to Attendance Allowance and to a Council Tax exemption. Depending on your father's needs, he might also be entitled to Attendance Allowance. Age UK are, apparently, very helpful with benefit claims.
There's a lot for you to take in - and a lot for you to organise. Keep posting and asking questions because people on this forum are very knowledgeable.
I think that you need to focus on getting in care for your parents (assuming that this is not already in place). SS can carry out a needs assessment if you're not sure what they need. If your parents will be funding their care then you can just go ahead and arrange this without reference to SS. Care agencies which provide personal care are regulated by the CQC. Your mother should be entitled to Attendance Allowance and to a Council Tax exemption. Depending on your father's needs, he might also be entitled to Attendance Allowance. Age UK are, apparently, very helpful with benefit claims.
There's a lot for you to take in - and a lot for you to organise. Keep posting and asking questions because people on this forum are very knowledgeable.
I had a similar experience. To this day, my Mum still hasn't seen her GP in person since her mixed dementia diagnosis. I was simply inundated with charity numbers and leaflets.
It was only when Mum had a few falls at home and was taken into the hospital by ambulance that health professionals started to take notice. All of a sudden the 'frailty team' at my Mum's GP surgery started to call me (I didn't even know this team existed) and she was assigned a social worker. I genuinely believe however the social worker was there to get my Mum out of the NHS system and into private care as so much pressure was put on me to get it sorted, which, when having a full time job, living some distance away and under enough personal pressures of my own, was a challenge in itself. I was given a deadline of 2 weeks to get Mum into a private home after going for D2A in an NHS home and I was finding homes could not take her due to staffing levels etc. Not to mention it was Xmas eve 2021...
To be honest, I only have anger for the way dementia sufferers and their families are treated and pressured. It she had cancer, she would be treated swiftly and with compassion. With dementia, she's treated like a commodity, being moved from here to there without any thought for how she herself will deal with such a huge amount of change.
It was only when Mum had a few falls at home and was taken into the hospital by ambulance that health professionals started to take notice. All of a sudden the 'frailty team' at my Mum's GP surgery started to call me (I didn't even know this team existed) and she was assigned a social worker. I genuinely believe however the social worker was there to get my Mum out of the NHS system and into private care as so much pressure was put on me to get it sorted, which, when having a full time job, living some distance away and under enough personal pressures of my own, was a challenge in itself. I was given a deadline of 2 weeks to get Mum into a private home after going for D2A in an NHS home and I was finding homes could not take her due to staffing levels etc. Not to mention it was Xmas eve 2021...
To be honest, I only have anger for the way dementia sufferers and their families are treated and pressured. It she had cancer, she would be treated swiftly and with compassion. With dementia, she's treated like a commodity, being moved from here to there without any thought for how she herself will deal with such a huge amount of change.
I’m sorry to say that me experience with my husbands diagnosis was very similar. I left the consultation with a bunch of booklets and the words read those and ring dementia forward for any advice. I’m lucky I have a brilliant GP who fights our corner due to personal experience of the condition and will always make time for me. When we went back the following year it was a new consultant and she is100% better. Now 2 years down the line he has just had a reassessment and she is still there and has time to explain and discuss things through. ?she will stay as he has just been diagnosed with advanced Alzheimer’s now and I know it’s only going to get worse.
The way people with dementia and there families are treated is disgusting AmandaJones is 100% right
The way people with dementia and there families are treated is disgusting AmandaJones is 100% right
Thanks everyone for your replies. Sorry its taken awhile for me to respond....so much going on at the moment. It is shocking that so many people seem to be having such a similar experience with dementia diagnosis. I have to say my mother has not been displaying agression of any kind...if anything when she has a bad night time episode she is more frighten and scared rather than being aggressive. This is why I have been questioning why they seem so keen to prescribe antipsychotics as a first line of defence. They just don't seem even remotely interested in pursuing other methods or medication first. We've not even been give so much as an information leaflet by them. Surely they have a legal duty of care to assess the needs of my father as a full time carer if nothing else?
It is SS who carry out needs assessments of both people requiring care and carers.
As has been said above, many GPs appear to take little interest in dementia and patients with dementia. It’s only when a PWD is admitted to hospital that things start to happen, basically because the hospital wants the bed. The hospital social worker will be called in to assess the person and arrange a care package if there is not already one in place and one is thought to be needed. Sometimes the PWD’s spouse or partner will say that no help is needed, in which case the PWD will be discharged home without any support. The hospital social worker will often arrange for an OT to visit the PWD’s home to see whether any aids and / or adaptations are needed. It seems to be easier to tap into the opaque system of community services when a PWD is in hospital because you actually manage to speak to someone, usually a social worker, and can ask about them.
Hospital discharge summaries often state that something is to be followed up or monitored by the GP but, in my experience with an elderly friend, this doesn’t seem to happen, which is pretty poor and probably one of the reasons that frail elderly people are frequently re-admitted to hospital within a few days of discharge.
As has been said above, many GPs appear to take little interest in dementia and patients with dementia. It’s only when a PWD is admitted to hospital that things start to happen, basically because the hospital wants the bed. The hospital social worker will be called in to assess the person and arrange a care package if there is not already one in place and one is thought to be needed. Sometimes the PWD’s spouse or partner will say that no help is needed, in which case the PWD will be discharged home without any support. The hospital social worker will often arrange for an OT to visit the PWD’s home to see whether any aids and / or adaptations are needed. It seems to be easier to tap into the opaque system of community services when a PWD is in hospital because you actually manage to speak to someone, usually a social worker, and can ask about them.
Hospital discharge summaries often state that something is to be followed up or monitored by the GP but, in my experience with an elderly friend, this doesn’t seem to happen, which is pretty poor and probably one of the reasons that frail elderly people are frequently re-admitted to hospital within a few days of discharge.
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