DAUGHTER TELLS OF BATTLE TO GET DAD ASSESSED Deaf people facing long wait for dementia help
A CHARITY worker who is deaf says she would leave Scotland if she develops dementia, describing the lack of specialist services as, “terrifying.”
Avril Hepner says she had to fight for a conclusive diagnosis for her dad Jack, who was also deaf, after he developed Alzheimer’s disease because there is currently no assessment tailored for patients with hearing loss.
Avril, who is Community Development Manager for the British Deaf Association Scotland, says she waited three months for a deaf interpretor to come up from England to diagnose her father.
According to the charity, the average waiting list across the UK is 18 months.
Avril says the majority of NHS and support services are geared towards the hearing population and that people with dementia can decline “very quickly” in care homes because of a lack of communication and stimulation.
Researchers estimate there are around 600-800 people in the UK with dementia who are deaf.
Avril said: “My father was deaf and he passed away two years ago at the age of 84.
“He was diagnosed (with dementia) through the Glasgow Memory Clinic with the usual tests. However, I also demanded that there be a specifically tailored deaf assessment.
“How can a hearing person assess potential communication difficulties and memory loss in a deaf person?
“People need to dig their heels in and ask for this.
“I think the average waiting list is 18 months. If you think there are 600-800 people, it could be too late for some people.
“My dad seemed to be responding appropriately-ish but my suspicion was that he was mirroring or copying what the interpretor was saying which was giving a false positive as to how well he was communicating.
“I stuck my heels in and there was a deaf person who came up from England, three months after the first assessment.
“After that assessment it was crystal clear that my dad had Alzheimer’s but there is nothing like that in Scotland currently.
“We definitely need more deaf people to be working in the NHS and to be involved in assessments.
“I think it’s absolutely vital to have that communication from deaf person to a deaf person.
“Out in the community deaf people are not as aware of the signs and symptoms of dementia.
“It affected my father socially because I tried to encourage him to go to the deaf club but you could see people looking at him, thinking what on earth is he talking about?”
Avril praises Holland, which has a dedicated, national centre for elderly people with dementia who are also deaf, including 64 apartments for those who need daily care.
She said: “It’s absolutely wonderful. There are doctors there who can sign.
“We looked at care facilities which were very suitable for hearing people but not for deaf people.
“Activities for people with dementia are very much music-related. Deaf people react very well to visual stimulus, photographs.
“A lot of deaf people who go into care homes decline very quickly.
“There were carers from Cordia who were well intentioned but all they could do was mime and gesture.
“I had tried to say to Cordia, you really need to expand your workforce to include deaf people.
“We need more interpretors with British Sign Language (BSL) on the NHS. I attended a lot of hospital appointments (with my father.)
“It was a lot of work and responsibility on my part to make sure interpretors were booked.
“If it couldn’t be, then I had to be there for my dad’s appointment.
“I now am really concerned if anything happened to me, I would head straight to Holland because as it is, it is terrifying for the lack of specialist provision.”
British Deaf Association Scotland has been given dedicated funding by the Life Changes Trust to help improve access to NHS, information and support services for deaf people who have dementia.
She said: “My father’s first language was BSL which is a visual, gestural, spacial language so access to information is very difficult.
“Access to support from the organisations is very difficult. They are used to dealing with hearing people.
“My dad actually passed away through prostate cancer.
“He was in hospital for the last six weeks. When I visited him I could see other families having real, quality time with their relatives but when I was there I had to make sure there was a doctor coming, was there an interpretor booked?
“My quality time with my dad was considerably less than hearing families visiting their hearing relatives.
“I always had a level of anxiety to make sure the appropriate supports were in place. I lost that six weeks which should have been quality time and that’s a regret.”
If you are affected by the issues raised in the article go to www.bda. org.uk/glasgow-office