Alzheimer’s Association Academy explores gender, sex and sexuality in dementia

On 16 November 2021, Alzheimer Europe held an online session of its popular Alzheimer’s Association Academy exploring themes around gender, sex and sexuality in dementia.

Alzheimer Europe’s Alzheimer’s Association Academy sessions have been running since December 2015, bringing together the member associations of Alzheimer Europe, members of the European Working Group of People with Dementia (EWGPWD), and experts on dementia from diverse institutions across Europe and beyond. Since the start of the COVID pandemic, these sessions have been held online.

Gender, sex and sexuality in dementia

The Academy session on 16 November, which was chaired by Dianne Gove, Director for Projects, Alzheimer Europe, was on gender, sex and sexuality in dementia. Representatives of member associations, members of the EWGPWD, representatives from pharmaceutical companies, and Alzheimer Europe staff participated in the session.

Gendered risk factors for dementia

The first speaker was Annemarie Schumacher Dimech from the Women’s Brain Project (Switzerland) who provided an overview of gendered risk factors for dementia. She explained the importance of taking into consideration the gender differences in brain and mental health.

She provided some specific examples, which were published in the 2020 report of the Lancet Commission by Livingstone et al. The paper reports 12 modifiable risk factors that account for around 40% of worldwide dementias, which consequently could theoretically be prevented or delayed, including education, obesity, depression and lack of physical activity.

Ms Schumacher Dimech underlined that persistent gender-based inequalities place women at a disadvantage for many modifiable risk factors contributing to dementia.

Alzheimer’s Association Academy attendees on 16 November

Quality of life and access to care for LGBTQ+ people with dementia

Linn Sandberg, Associate Professor of Gender Studies, Södertörn University, Sweden discussed “Quality of life and access to care for LGBTQ+ people with dementia”. She explained what research tells us more generally about older LGBTQ+ people and their specific care needs.

In her talk, she emphasised that LGBTQ+ people have a higher risk of cognitive impairment among sexual minority older adults. Risk factors include depression, loneliness and isolation, obesity, poor cardiovascular health and smoking.

People from the LGBTQ+ community who are living with dementia are more likely to reside in care homes, which she said can be linked to the fact that fewer of them have children and that their informal care networks consist of ”families of choice” rather than families of origin.

She also presented key published findings on how gay and lesbian people experience dementia and on the understanding of experiences and needs of LGBTQ+ people. Finishing her talk, Linn Sandberg stressed the need for more awareness and training of dementia care staff and highlighted that dementia should not be a barrier to expressing one’s sexual or gender identity.

Relationships and sexuality in care homes

The final presentation was delivered by Aileen Beatty from Akaricare (UK) who spoke about relationships and sexuality in care homes. She first gave a regulatory context on relationships and sexuality in adult social care services from the Care Quality Commission (CQC) – the independent regulator of health and social care in England. The guide, published in 2019, is aimed at CQC staff.

Ms Beatty added that the definition of sexuality is deliberately broad and gave some reactions to this guidance. She described some findings from the 2020 CQC sexual safety report, which highlighted devastating cases of sexual abuse in social care. She also provided some specific examples of experiences of care and the factors which influence the response of staff.

Both Academy sessions ended, as always, with a Q&A session, giving delegates the opportunity to question the panel and to discuss the topics in further depth.

Acknowledgements

The Alzheimer’s Association Academy received funding under an operating grant from the European Union’s Health Programme (2014–2020).

Alzheimer Europe gratefully acknowledges the support of its gold and silver sponsors and of the corporate sponsors of the Alzheimer’s Association Academy.