On International Women’s Day it is worth reflecting on the huge impact that dementia has on women in the UK and globally. I am proud to be a female leader of a charity that supports people affected by dementia and so the impact that the condition has on woman touches my life on a daily basis. I am regularly amazed and humbled by the courage, tenacity and compassion shown by the many women I meet.
Woman are disproportionately affected by dementia, women experience a higher prevalence of dementia and are more likely to have a caring role. In 2018 dementia accounted for the highest number of female deaths in the UK, accounting for 16.7% of all female deaths. The increased life expectancy of women, compared to men, goes some way to explaining this but there are other factors that are still unknown. More research into why women are more likely to experience dementia is urgently needed.
Woman experiencing dementia face the burden of discrimination that prevents them from accessing the support they need. Attitudes towards woman with dementia are different to attitudes towards men. It is not uncommon to hear things like ‘she is just a bit dotty’, this trivialises the impact dementia has on a person and makes them less able to get the diagnosis, support and care they need.
There is also a loss of identity and self-worth that women feel when faced with dementia. In a society that still puts expectations of domesticity on women it can sometimes be difficult for a woman to adapt to the changes dementia may bring. I was saddened recently when one of our care team told me about a lovely lady she has recently started supporting, who is desperately lonely. Our lovely lady lives alone but has many friends around her, however, she goes for days without seeing anyone. Despite her friends many requests to see her she declines, not because she doesn’t want to see them but because she is ashamed of the appearance of her home and herself, now she is less able to manage these things. I hope with time she will be able to trust our care worker to help her address the things that are important to her so she can start to receive her friends.
Attitudes towards women as informal carers is also different to those of men, it is suggested that 2 out of every 3 carers, for someone with dementia, are women. Women are often expected to fulfil a caring role. Where a woman has a partner or parent with dementia it is just expected that they will carry out the caring role, this is an expectation that is not placed on men. This all too often results in women having to limit their careers, juggle the caring of parents or elderly relatives with looking after children or unable to say they just do not want to be a carer.
A few years ago a lady who was looking after her husband with dementia told me she could no longer cope, this was a huge thing for her as she felt this overwhelming sense of pressure to do what society expected of her. But her life was not easy as she was supporting her husband who had a very rare form of young onset dementia. His symptoms were quite profound, and she simply felt unable to cope with the daily challenges and exhaustion she was dealing with. When she contacted her social worker and the memory assessment team to get help she was told ‘he is your husband, you need to look after him’. I feel sure they would not have said this if the roles were reversed.
Dementia can have a devastating effect on someone’s life but I am regularly blown away by the woman I meet or the stories my team tell me. Women, who despite everything show courage, tenacity and deep, deep love to overcome the challenges dementia brings. My fabulous professional friend Lorraine is a constant source of inspiration to me. She often tells me that she has dementia but dementia does not have her. She uses her ability to organise and plan to overcome the difficulties a fading memory will bring. With a handbag loaded to capacity she only leaves her house when she knows she is prepared for every eventuality; a hairbrush, a mobile phone charger, a diary, a pen and her all-important Estée Lauder lipstick.
Women also, who through the deepest love for their husbands, support them in the most compassionate and empowering ways. It is impossible to describe the look that I see one of the ladies, who brings her husband to our Beacon Day Support Centre, gives to her husband when she picks him up. A look that speaks of love, friendship and passion, a look that lets him know that he may have dementia but dementia does not have them.
As it is International Women’s Day let’s recognise that dementia does have a greater impact on the lives of women and ensure we do everything we can to help them get the support they need to live the life they want and not have to worry about what is expected of them.
If you know someone affected by dementia in North Kent let them know we are here to help. Call us on 01474 533990.
Katie Antill
Joint CEO