A national conversation to inform a new Dementia Strategy

It means that 90% of my Dads brain who is dying from dementia is already dead. It means my Dad is suffering horrifically from this disease and is extremely upset and distressed 90% of the time. The effects this has had on the family are heartbreaking.
He lives in a residential care home, and self funds his so called care.

There is no support whatsoever for us as a family. When arguing with the social workers/Doctors about placing my Dad in a care home, there was nobody to support us or advise us of our rights regarding the placement. I contacted 6 legal firms for advice as we did not wish to place him in a home. None of them were able to help or were helpful. My Father is not supported medically in the care home, as he does not receive any medical treatment for his terminal neurological medical illness.

Lots of issues need to be changed as these make people like my Dads experience of dementia more painful, distressing and damaging than need be. I am reluctant to mention these here as I know they will be ignored.

1. Treatment. Denying my Dad and people like My dad who are dying from the terminal illness advanced dementia treatment (therapy, medication, clinical trials) is wrong and exactly what happens at present. Other people dying from other terminal illnesses receive treatment for their conditions, but people dying from dementia receive no treatment. Discriminatory and unfair.

2. Similarly, charging dementia residents accommodation charges is wrong, unfair and discriminatory. These have already been paid for by a lifetime of NI& ITax payments by the patients. NHs accommodation is provided for people suffering from other conditions with almost identical neurological degeneration as those suffering from dementia. Those whose neurological condition are caused by factors other than dementia receive free accomodation, those whose neurological condition is caused by dementia have to pay for their accommodation. The same goes for people dying from other terminal illnesses. Accommodation is often paid for by the NHS if a person is dying from cancer, but not if the person is dying from dementia. Not fair. People dying from dementia do not need or receive 24 hour care and do not have a prognosis beyond 18 months. Claiming the contrary is often used as an excuse to not provide dementia patients the treatment and accommodation they are entitled to receive from the NHS.

The amount that people like my Father have to pay for their residential accommodation is grotesquely excessive and totally unaffordable for the average patient. My Dad pays £1350 per week and has paid more than £90,000 so far in fees for his healthcare. This and the fact that there is no upper limit to the fees, means he will be financially liquidated to pay for health services he ought to receive for free by the NHS. His house had to be sold to pay the fees. In addition to having dementia, this
great crime as he referred to it prior to his current degeneration, broke his heart. He was absolutely devestated knowing that everything he worked for would be lost to pay for care home fees, he believed by law and morality ought to have been paid by the NHS. He asked me to blow up-or otherwise destroy his house, rather than allow the care home/local authority/Scottish Govt confiscate it from him .

If the care home fee's for healthcare were paid for by the NHS or reduced to affordable levels, tens of thousands of self funders and their famillies would not have to be psychologically/emotionally devestated, in addition to having to deal with the effects of a devestating terminal illness.

The grandchildren of patients dying from dementia could be financially helped by the value of the the patients house being used to improve their life chances, rather than be used to pay asset stripping care home fee's.

Nothing. Everything is wrong. The current system increases the pain and suffering of poor people in its grasp who are dying from dementia. The system is designed to work to benefit the Scottish Govt/NHS by transferring the responsibility to pay for dementia patients healthcare from the NHS/Govt to private individuals. Local authorities attain power and social workers get decent jobs. The dementia patients are the ones who suffer. They are warehoused in care homes amongst non dementia mentally ill patients who bully them relentlessly. Their medical conditions are not treated. They have to pay £1000-£1500, to be housed in conditions no better than that of a 19th century mental hospital, when the patients should be in hospitals. Nobody cares about the patients and nobody has any intention of changing the current system which increases the pain and suffering of poor, elderly dementia ridden terminally ill people. Call yourself human beings? Dont make me laugh. Everyone who supports the current system, (ie the Scottish Govt) supports this privatisation of the NHS and is a criminal.

No point is there?