I read with interest the results of your survey, my wife has mixed dementia we do not get any support from social services, I wasn’t aware they did provide any support If you live in your own home.
Our GP. Is aware of my wife’s dementia but I cannot say they support us in any way regarding her dementia, unfortunately since Covid seeing GP’s has become extremely difficult and trying to get appointments is a nightmare.
Following her initial diagnosis from the memory clinic we have had no other contact from them, that seems to be most people’s experience.
We have found some areas of the NHS do not seem to understand dementia and how to deal with patients or their carers, the worst examples we have experienced is with physiotherapist who have expected patients with dementia experiencing short term memory problems to understand their treatment and remember to do exercises on their own, but do not like their carer to answer and be present. This is our own personal experience. I have also experienced problems with some staff when you explain the person you are looking after has memory problems so can you speak for them they want to speak to them first, if this a phone call they have no way of knowing that they are actually speaking to. In one instance a receptionist insisted on speaking to my wife and arranged an appointment, unfortunately she then ended the call, my wife had forgotten the details of the appointment or even if an appointment had been made. It could be that some dementia patients from initial appearance do not seem to have any problems, they can conduct a good conversation, the fact that they will forget the conversation and the person a short time later is not seen or understood by some individual.
We both arranged lasting powers of attorney, unfortunately some staff do not understand these or choose not to, and on the phone I accept it is difficult to prove you have one in place, based on my experience it is difficult to see the point in them.
My wife’s short term memory can be very bad and she can be confused in unfamiliar places, she also has severe problems with arthritis, I have a blue badge for driving, very occasionally my wife is taken out by one of our family, it would be extremely useful if she had a blue badge for these occasions, I mentioned that to get into and out of the car she needs to open the car door very wide. The assessor appeared to ignore her dementia and dismissed the need to open car doors wide, making disabled parking bays essential, her arthritis requires a need to park close to the destination. The request was refused, the assessor again ignoring or not understanding dementia wanted to know how many pain killers my wife took daily for her arthritis they didn’t understand that a dementia patient would not necessarily take medication, if she complains of pain I will get her to take some pain killers. I think this illustrates the lack of understanding of dementia. A blue badge is sometimes looked at as way to avoid parking fees by some people without disabilities, in most instances most of my parking is at free supermarket car parks. I did appeal but this was ignored.
Since my wife developed dementia most of our family and friends avoid visiting or phoning so there is little support from there, some close members of family now might visit once or twice a year, to a certain extent we have become invisable people, not only to family, friends, neighbours, social services and the health services, this is our reality.
Dementia is a terrible disease and can be a hidden disease with sufferers avoiding contact, not always by choice but unable to mix socially unless carers, family or friends help them to mix.
Our GP. Is aware of my wife’s dementia but I cannot say they support us in any way regarding her dementia, unfortunately since Covid seeing GP’s has become extremely difficult and trying to get appointments is a nightmare.
Following her initial diagnosis from the memory clinic we have had no other contact from them, that seems to be most people’s experience.
We have found some areas of the NHS do not seem to understand dementia and how to deal with patients or their carers, the worst examples we have experienced is with physiotherapist who have expected patients with dementia experiencing short term memory problems to understand their treatment and remember to do exercises on their own, but do not like their carer to answer and be present. This is our own personal experience. I have also experienced problems with some staff when you explain the person you are looking after has memory problems so can you speak for them they want to speak to them first, if this a phone call they have no way of knowing that they are actually speaking to. In one instance a receptionist insisted on speaking to my wife and arranged an appointment, unfortunately she then ended the call, my wife had forgotten the details of the appointment or even if an appointment had been made. It could be that some dementia patients from initial appearance do not seem to have any problems, they can conduct a good conversation, the fact that they will forget the conversation and the person a short time later is not seen or understood by some individual.
We both arranged lasting powers of attorney, unfortunately some staff do not understand these or choose not to, and on the phone I accept it is difficult to prove you have one in place, based on my experience it is difficult to see the point in them.
My wife’s short term memory can be very bad and she can be confused in unfamiliar places, she also has severe problems with arthritis, I have a blue badge for driving, very occasionally my wife is taken out by one of our family, it would be extremely useful if she had a blue badge for these occasions, I mentioned that to get into and out of the car she needs to open the car door very wide. The assessor appeared to ignore her dementia and dismissed the need to open car doors wide, making disabled parking bays essential, her arthritis requires a need to park close to the destination. The request was refused, the assessor again ignoring or not understanding dementia wanted to know how many pain killers my wife took daily for her arthritis they didn’t understand that a dementia patient would not necessarily take medication, if she complains of pain I will get her to take some pain killers. I think this illustrates the lack of understanding of dementia. A blue badge is sometimes looked at as way to avoid parking fees by some people without disabilities, in most instances most of my parking is at free supermarket car parks. I did appeal but this was ignored.
Since my wife developed dementia most of our family and friends avoid visiting or phoning so there is little support from there, some close members of family now might visit once or twice a year, to a certain extent we have become invisable people, not only to family, friends, neighbours, social services and the health services, this is our reality.
Dementia is a terrible disease and can be a hidden disease with sufferers avoiding contact, not always by choice but unable to mix socially unless carers, family or friends help them to mix.
