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Under 40 and with Dementia – One young man’s race against time to change hearts and minds

Dementia is the most common form of neurodegenerative disease in old age. Although most people living with dementia are above the age of 65 years, there are a number of individuals who are diagnosed much earlier.


And this was the case for Patrick Ettenes, a 39-year young man from the Caribbean but living in the UK, in which diagnosis came at the age 31 years. According to doctors, Patrick already outlived his years!


Most of us would take such diagnosis with deep concern but for Patrick, this meant to be a challenge, one that would lead to important changes. Witness to this is his Award of Positive Role Model of the Year in 2019 at The National Diversity Awards and was honoured as one of 10 everyday LGBTQ heroes at the Attitude Pride Awards in 2021. As someone living with HIV and early onset dementia, Patrick works to raise understanding and awareness around these conditions. Among his notable endeavours, he has a long running association with Alzheimer’s Society and LGBT Foundation in the UK, and helped to launch Bring Dementia Out to improve services for LGBT+ people affected by dementia. He is now branching out to work with Alzheimer’s Europe around inclusive for LGBTQ+ people and Black & People of Colour affected by dementia. Patrick is a much sought-after speaker and writer throughout the UK, Europe, Canada, USA and Barbados – his home country.


Over the past years Malta has witnessed various initiatives and service provision to support persons living with dementia and their caregivers. However, accessibility of such services may not encompass diverse realities, especially those who do not fit the norm, and identify as LGBTIQ.


In further exploring such realities, and in bridging together Malta Pride Week as well as World Alzheimer’s Month, Malta Pride, run under Allied Rainbow Communities (ARC) has teamed up with The Malta Dementia Society, and Care Malta in organising a talk on LGBTQ & Dementia: The Lived Experience, by bringing in as Guest Speaker Patrick Ettenes, who will talk about his personal experience as well as share his tips and expertise on the matter.



How does it differ identifying as LGBTIQ and living with dementia?


LGBTQ+ people require inclusive services with an awareness of their needs – just like anyone else!


There is often a history of discrimination experienced by many LGBTQ+ people of all generations when accessing mainstream services. With this in mind, it is not surprising that many people have a fear or distrust of such services. Making efforts to include LGBTQ+ literature and signposting within services can make a huge difference in the confidence LGBTQ+ people have when accessing them. LGBTQ+ people’s voices are not always included within the development of training and resources; however, there are many examples of the kinds of challenges LGBTQ+ people living with dementia face.


Some LGBTQ+ people living with dementia may not remember that they have legal protections now, which would not have existed in their earlier life.


Only up until 2013 Malta has seen a successful wave of LGBTIQ rights legislation. Since October 2015 according to ILGA Europe, for the 6th year in a row, Malta continues to occupy the number one spot across Europe, who made LGBT rights equal at constitution level with a score of 94%. But while there has been progress, challenges persist – particularly for those in the LGBTQ+ community living with dementia. We must confront these realities and give voice to a group that is, at present, unheard.


It is estimated that 50,000 of persons living in Malta identify as LGBTIQ, with approximately 5,000 persons above the age of 65 years, yet it is unknown how many are living with dementia. In the UK, estimates suggest that there could be as many as 68,000 - 85,000 LGBT people living with dementia.


Barriers faced when reaching out health care system is primarily that of the assumption of heterosexuality and cisgenderism, where language used often being reflective of such assumptions. There are also challenges arising around next of kin (even for married same sex couples). Some same sex partners of an LGBTQ+ person living with dementia, despite being open about their relationship, reported being referred to as a “friend/brother/sister” by service providers rather than as their partner. This can be very distressing and can add stress to both the person living with dementia as well as their partner.


For transgender persons, there are very great concerns that they may not be supported to be themselves within housing and care services. Transgender persons may not remember that they have transitioned, or may be wrongly gendered by services. This can be very distressing, and additional support may be required in order to ensure they feel safe in these environments.


With lack of understanding of their history and culture, where do you turn, when no representation is at sight?


Research highlights that LGBT People living with dementia are:

- Less likely to have children to help with their support.

- Less likely to have a long-term partner to help with their support.

- Less likely to have wider family support, and may rely more on their “chosen family”.

- More likely to have lived experiences which may have contributed to the development or progression of dementia (e.g. alcohol/substance misuse, trauma, general healthcare inequalities leading to later diagnosis).

- More likely to be anxious of accessing services and support as an LGBT person because of historic and current discrimination from staff, residents and service users.

- More likely to be isolated due to the lack of services and support.


You are invited to further this discussion, by guest speaker Patrick Ettenes, who will talk about both the personal experiences of living with dementia as an LGBTQ+ person of colour and an opportunity to hear about the small changes you can make to your service to be more inclusive and accessible to a community that faces many health inequalities and barriers to accessing healthcare.


Join us on the 5th September, at Casa Arkati, Mosta between 6:30pm-7:30pm.


Let us talk about the things we can all do in our practice and in our organisations now to make sure LGBTQ+ people affected by dementia are included and celebrated for who they are.


Entrance is free, however registration is required. To register: http://bit.ly/3zO19Si For further information please contact: 99867700

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Allied

Rainbow

Communities

Registered Voluntary Organisation Number: 1136

Address:

19, Triq San Mark, Valletta

VLT1362. Malta

Email:

info@arc.org.mt

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+356 9927 2999

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