This week the Alzheimer’s Society is launching a campaign to raise awareness of dementia, PinkNews.co.uk’s Marc Shoffman discovers the effect of the disease on the gay community.
The phrase “gay community” is often thrown into the ring when talking about same-sex issues such as HIV, discrimination, marriage, and homophobia, but under the rainbow flags and civil partnership certificates, an increasing section of the group appear to be overlooked, despite having unique needs.
For the older lesbian, gay, bisexual and transgender (LGBT) generation Alzheimer’s disease can cause stress, trauma and hurt that even positive legislation such as civil partnerships and the Equality Act cannot fix.
“How do care homes cope with someone being called a partner who has not had a civil partnership, it’s too late to have a civil partnership as you need consent from both sides, it’s a lot harder to guarantee goods and services to people who cannot speak for themselves,” says Roger Newman, 65, a co founder of the Alzheimer’s Society’s Lesbian and Gay Network, which provides support for gay partners and carers.
It is estimated that in the UK there are between 35,000 and 70,000 lesbian, gay and bisexual people caring for a person with dementia, this is based on the fact that between 5% and 10% of the population is thought to be homosexual and 750,000 people have dementia.
Dementia is a term used to describe various different brain disorders that have in common a loss of brain function that is usually progressive and eventually severe. There are over 100 different types of dementia, the most common being Alzheimer’s.
Symptoms of dementia include loss of memory, confusion and problems with speech and understanding.
There is a 1 in 5 chance of a person in their 80s having dementia, although many cases are being diagnosed in people as young as 40, the society claims.
Roger joined the helpline after caring for David, his partner of 30 years, who died in 2000 after succumbing to dementia when he was 52.
Roger said: “David had to be sectioned in 1992 because his behaviour was so challenging.
“He went missing from the residential home and was found dead on the beach.”
He was happy to say him and his partner did not experience any negative feelings except for at one time being mistaken for father and son. But many gay and lesbian carers and patients may suffer from memories of anti gay laws and a lack of preparation, “The over 60’s know what its like to be illegal, to experience police entrapment, to lose jobs, and to ensure nobody knows they are gay. They have led reasonably anonymous relationships but are now in the public domain as they will need public services and care,” he said.
He added, “A lot of partners haven’t worked out what to do if that happens, there are sufferers who have made no power of attorney.
“I have spoken to one carer who couldn’t think of anyone who knew they were gay and have dealt with professional service providers calling the help line thinking patients were lesbians but not knowing how to confront the issue.”
The important thing Roger says, is to bring the older generation back into the gay community through raising awareness of their specific needs, “It’s worse than cancer, you are dealing with irrational behaviour, incontinence, anger, violence, and not being able to talk.
“Being in a residential home is a lonely experience, they are not going to ask if you are heterosexual or homosexual, am I going to open The Pink News in the room and read it in the lounge?
“There is a tremendous need here for training of staff who work in residential homes to show empathy and for managers to create a truly inclusive environment for lesbian and gay residents so they don’t have to hide their sexual orientation.
He said that although his late partner’s care home was very good, “you need support of gay friends and people in that area.
“When David was in a home two gay friends placed a cousin as a resident to the same place, I felt at ease as I was not the only gay in the village.
“The community must be all encompassing, when we talk about being gay it always reverts back to young people.
“You need to look at needs of old people as they will be the majority sooner or later.”
Up until two years ago the Alzheimer’s Society was the only national charity with a dedicated gay section for older people.
The organisation’s Gay and Lesbian Carers Network provides support to partners looking after their loved ones or relatives who may face unique problems such as coming out to medical professionals and homophobia.
The network is funded centrally by the society, but Roger said there is a real difficulty in obtaining long term funding and thus ensuring the social group is adequately represented.
However, the voice of the older LGBT generation appears to be getting louder now with the support of the Age Concern charity.
Age Concern has a national programme that works for older lesbians, gay men and bisexuals, called Opening Doors. The programme gives support and information on what is happening nationally and locally and produces resources, the latest of which, The Whole of Me, addresses the needs of LGB people in residential care.
Mr Newman said: “There is a huge amount of ageism in society in general, things are great when you are active and can look after yourself, but chances are that won’t be forever.”
Alzeimher’s Awareness Week runs from the July 2 2006 to July 8 2006.
Full information about the lesbian and gay carers network can be found on www.alzheimers.org.uk and accessed through the Alzheimer’s Helpline on 0845 300 0336