The diagnosis of any serious illness is a huge challenge for any of us whether LGBT or not, however the one significant feature of our situation remains that we are more likely to have to cope with it alone – the majority of us are single. So for the LGBT person making a Will and creating Power of Attorney is not just important but surely essential. For the person diagnosed with dementia, to say clearly and precisely what their future care should be like, is so important and it is wise to do it as soon as possible. For some LGBT people past relationships with family may not always have been happy and it is wise for everyone, both relatives and friends, to be clear what one’s wishes are and thus avoid any conflict. Here are some case histories:-
When Joan’s dementia diagnosis was confirmed, both she and her partner were somewhat startled to receive renewed interest and visits from her long separated family and both doubted their motives.
When Peter said quite clearly how he wanted his care to be conducted, his family intervened and eventually went to court to contest the ‘rightness’ of his caring situation; fortunately they were unsuccessful.
There is also surely a need for advocacy services tailored to meet the needs of single people, like LGBTs, who, not having the support of partners and without close family ties behind them when making applications and responses to various agencies and government departments, might need assistance.
Fortunately we now live in a world where dementia care is more widely available and effective but, however well intentioned the provider may be, there remains for so many Lesbian and Gay people a feeling that they are different and this makes incorporating them into established care situations difficult, and for some, impossible. Consider again those defensive walls which have been created because of past attitudes to sexuality. What those walls have done is to enable us to construct a distinct and separate world. It is a world where a gay radar has been created so that we can recognise other’s sexuality without a word being said and without making too many mistaken assumptions. It is a world where, certainly for men, and to a certain extent for women there is even a separate language – talk to a gay man about ‘cottages’ and you have entered an entirely different universe of discourse. It is a world where our appearance and manner of dress can say a great deal about behaviours and choices. It is also a world where our cultural interests have a direct relationship to our sexuality. All these factors and others have a significant bearing on the value of the support which providers might give to LGBT people, and not to consider them would be a mistake and a failure of personalisation. For example:-
Pat’s local dementia group has a monthly singalong event which is fine for those who find singing along to World War 2 songs enjoyable, but since she has been a professional singer and still knows what she wants from singing, wild horses couldn’t drag her along to take part in that activity.
David loves film and the dementia group has occasional showings, but the assumption has been that as a man he wouldn’t want a Judy Garland film or a viewing of Priscilla Queen of the Desert and in his case that assumption is wide of the mark.
Similarly watching TV can be a valuable resource for occupying those with dementia but don’t assume that stereotypical men’s and women’s programmes are likely to be the choice of Lesbians and Gays. It is a gift for LGB and T people that advances in technology such as ipods, ipads and downloadable films can ensure that activities for those with dementia do not have to consist of a one size fits all experience but instead can be directly tailored to the personal interests of each one. This is where local LGBT groups could service the needs of their carers and those with dementia to supplement other care provided elsewhere.
When we consider the nature of our relationships and those deeper feelings surrounding our sexuality, dementia care ignores them at its peril:-
As Brian’s dementia deepened it became clear that he really did need residential care, but from the moment of him entering the home he started to become a different person. Gone was the hugging and kissing one always received on meeting him. Gone was the outrageous campery which had always been hilarious to his friends; and gone were the stories, which even at the 50th recounting were a joy to hear. The residential home didn’t intend to have that effect on Brian but its failure to understand and encourage him to give vent to the depths of his sexuality had effectively forced him to give up on being the real person he was.
Then there was Jim who, previously always kissed his partner wherever they were and now, with the onset of dementia, the hugging and kissing actually increased, but his partner now felt uncomfortable about this because effectively they were out of their private world and now in a different one. The partner felt that they might have to temper their behaviour, not for their own sake, but for the sake of others around them.
Then again Jennifer and Brenda, both residents in a care home gradually became inseparable and walked around hand in hand all day. The home owner said that the one believed the other was actually her husband, but when they were found in bed with each other, Jennifer’s family intervened and demanded that Brenda be moved to another home.
There are other challenges too, not least for example where it is suggested that as many as 1 in 12 gay men over the age of 60 may be HIV positive – this has repercussions for health provision but, since HIV dementia can exist, it also provides a separate challenge for dementia care.
Then there is the matter of sexual activity related to those with dementia and whether consent is really possible as the condition develops. It is surely right that some have not shied away from dealing with the issue and there remain unanswered questions. Whatever the outcomes might be it is surely right that homosexual activity should be treated on an equal basis as heterosexual activity.
Out there, throughout the UK, it is highly likely that there are at least 40,000 LGBTs with dementia but where are they? Only a proactive approach to reaching all communities will ensure that this group is not left uncared for.