LGBT+ and Parkinson’s - Parkinson's Europe

Parkinson’s affects each person differently, but people with Parkinson’s from the LGBT+ community face unique challenges, ranging from issues with accessing healthcare to symptoms, stigma and isolation, and even legal rights. The quality of healthcare and the protections in place for LGBT+ individuals varies greatly across Europe.

We hope this guide both raises awareness of these issues and gives some useful advice to LGBT+ individuals living with Parkinson’s:

What does LGBTQIA+ mean?

LGBTQIA+ (or LGBT+ for short) is an inclusive term that describes a range of sexual orientations and gender identities.

It stands for Lesbian, Gay, Bisexual, Transgender, Queer or Questioning, Intersex and Asexual. The plus sign represents all other identities not encompassed in the acronym, such as pansexual, non-binary, or genderfluid, among others.

In this guide, we use LGBT+ as a shorter term which is intended to be inclusive of all sexual orientations or gender identities.

Healthcare experiences for LGBT+ people with Parkinson’s in Europe

There are numerous studies showing that members of the LGBT+ community experience significant inequalities in healthcare across the globe – and sadly, Europe is no exception.

Some of the main issues include:

Stigma

The fear of being unfairly judged has a direct impact on LGBT+ people when accessing healthcare.

One European study found that almost half of LGBT+ people had not disclosed their sexual orientation or gender identity to their healthcare providers.

When it comes to Parkinson’s-specific healthcare, the author of a 2021 study about LGBT+ people with Parkinson’s said ‘I have had patients who are reluctant to reveal their identity because of fear they will get denied healthcare.’

Many LGBT+ people with Parkinson’s have also delayed seeking medical care entirely because of concerns about how they will be treated.

Importantly, however, some research (such as this) has found that disclosing your identity to a healthcare provider leads to better health outcomes.

To get the best Parkinson’s care possible, it’s important for you to feel comfortable being completely honest with your healthcare provider. If you’re able to, try to find out if the healthcare institutions you’re using practice LGBT+-inclusive language or have initiatives such as ‘visual affirming cues’ (like the NHS Rainbow Badge scheme in the UK, and this guide gives other examples across Europe) to reassure you that you’re in a welcoming space that understands the issues LGBT+ people face when accessing healthcare.

If you’re feeling uneasy about attending a healthcare appointment, you can also take a friend of family member with you for extra support.

Discrimination

The 2020 EU Agency for Fundamental Rights (FRA) survey found that 16% of LGBT+ people faced discrimination in healthcare, and among transgender respondents this rose to 34%.

A recent systematic review of the healthcare experiences of LGBT+ people in Europe found that both the fear of discrimination and previous experience of discrimination in a healthcare setting can make it more likely for LGBT+ individuals to avoid accessing the healthcare they need.

And sadly, several countries in Europe do not yet have adequate laws in place to protect people against discrimination on the grounds of their sexual orientation or gender identity.

If you experience discrimination on the basis of your sex, gender identity or sexual orientation, it’s important to report it if you feel safe to do so. If your country doesn’t yet give you legal protection against discrimination, you could try seeking support from a trusted organisation like ILGA-Europe. You may also find that connecting with LGBT+ community groups may provide security, information and support.

If you’re worried about experiencing discrimination at a healthcare appointment, you can also take a friend or family member with you to appointments for extra support.

Access to appropriate care

While stigma and discrimination are two of the main reasons that an LGBT+ individual with Parkinson’s may have issues seeking the healthcare they need, there are further barriers, including:

Inadequate training of healthcare professionals

This includes a lack of inclusive language, insufficient knowledge of the unique health issues faced by LGBT+ people, or fears of being inappropriately ‘outed’ or misgendered.

It’s promising that there are increasing numbers of training initiatives being developed to improve knowledge and understanding of healthcare professionals towards the LGBT+ community, including this one.

Access to single-sex spaces

While some European countries now have Gender Recognition laws that allow people to use facilities (such as bathrooms and sex-segregated wards) which align with their identity, there are many countries where this isn’t a legal requirement. This can make LGBT+ people with Parkinson’s concerned about their safety and dignity during medical appointments and hospital stays.

While there’s limited ways to overcome this when the law doesn’t protect you, you should find out what the laws around equality and same-sex spaces are in your country (for instance, via the Trans Rights Index & Map). Even if you don’t have legal protections, your healthcare setting should still want to ensure that you feel safe and respected, so – if you feel safe to do so – ask whether you can receive care in a way that accommodates this.

Differences in Parkinson’s symptoms for LGBT+ people

Statistics show that LGBT+ people may experience some Parkinson’s symptoms differently. For example:

Mental health

Research shows that the LGBTQ+ community experiences higher rates of mental health issues like depression, anxiety and stress compared to the general population. Anxiety, stress and depression are also common symptoms of Parkinson’s.

Mental wellbeing is of particular importance in people with Parkinson’s as it is associated with better treatment adherence (taking medication on time and regularly), and it may also be a consideration when assessing your suitability for treatments such as Deep Brain Stimulation surgery.

It’s really important to prioritise your mental health when living with Parkinson’s, especially if you’re LGBT+, so it’s crucial to:

Discuss any mental health issues you’re experiencing with your healthcare team so they can help you find the right medical treatments
Explore other ways to support your mental health, such as counselling, creative therapies, complementary therapies, or a local Parkinson’s support group.

Posture and voice

Parkinson’s symptoms such as a soft voice and stooped posture might affect self-perception and cause increased gender dysphoria (a sense of discomfort or distress that occurs when your body, or the way people perceive you, doesn’t match who you really are) in transgender people with Parkinson’s.

It may help to discuss these issues with your doctor so they can be addressed by your multidisciplinary care team, for example by referring you to speech therapy, physiotherapy or counselling to help you with these symptoms.

Differences in Parkinson’s treatment for LGBT+ people

LGBT+ people living with Parkinon’s also have unique obstacles when it comes to the treatment they may receive. For example:

Hormones

The hormones estrogen and testosterone are often prescribed as part of gender-affirming care for transgender, non-binary or intersex people.

It is not yet known what role hormones play in helping or worsening Parkinson’s symptoms. For instance, studies are ongoing about whether estrogen could lessen certain symptoms in cisgender women, while other studies are currently determining if there’s a higher risk of Parkinson’s among people who have used hormone therapy as a treatment for menopause.

Some Parkinson’s healthcare professionals may also not be well-versed in gender-affirming care or the multidisciplinary resources that transgender and other LGBT+ people may need.

If you are undergoing hormone therapy, it’s important to let your doctor and your wider Parkinson’s multidisciplinary healthcare team know, so they can tailor your care around your individual needs.

Deep Brain Stimulation

LGBT+ people are more likely to have less of a supportive network of friends and family around them (see Isolation, below), or they may also be less inclined to reveal the identity of their partner or support systems.

As Deep Brain Stimulation is a major surgery, and part of the assessment for suitability includes establishing that the person with Parkinson’s will have a caregiver to help support them in hospital and look after them after the surgery, this means that LGBT+ people with Parkinson’s are less likely to be approved for this treatment.

The increased likelihood of LGBT+ people to experience mental health issues (see above) may also be a contraindication for DBS surgery, as well as other treatments like dopamine agonists, which can exacerbate conditions like anxiety, depression or impulse control disorders. This could occur even if an LGBT+ person has no history of mental illness, because of stigma.

Try to be honest with your healthcare providers, and ask for them to give a full explanation for any decision made around your eligibility for DBS surgery or other Parkinson’s treatments. You can usually also ask for a second opinion if you aren’t happy with the decision made.

Isolation in LGBT+ people with Parkinson’s

LGBT+ people living with Parkinson’s are more likely to experience isolation.

They are more likely to live alone than heterosexual or cisgender people, less likely to have children, and more likely to be estranged or disconnected from their family, or have smaller family networks.

This leaves many LGBT+ people at a disadvantage when it comes to getting a timely Parkinson’s diagnosis, or having the right support at home from a caregiver.

Some LGBT+ people with Parkinson’s may also be more hesitant to take part in Parkinson’s support groups or exercise classes, for reasons such as fear of judgement, sociocultural expectations that don’t match their lived experience, or feeling less safe accessing the single-sex groups that match their identity.

Despite these additional challenges, it’s crucial to build a support network that works for you. That might include taking part in a local Parkinson’s or LGBT+ support group (a great example in the UK is the monthly online LGBTQIA+ network meeting organised by Parkinson’s UK) , or finding an exercise class or hobby that connects you to people you can trust and whose company you enjoy. See: Self Help and Living Well.

Lack of research

Like most areas of medical research, the LGBT+ community are underrepresented in Parkinson’s research at all levels. Movement disorders are one of the least researched areas in LGBT+ neuroscience.

There are many reasons why this is the case:

LGBT+ people may feel uneasy getting involved in research because they fear judgement, discrimination or being outed
Parkinson’s research trials might not use inclusive language or do enough to reach or appeal to LGBT+ people.
Due to their increased risk of isolation, LGBT+ people are less likely to be present at the Parkinson’s social groups where current research trial opportunities may be advertised.

It’s hugely important that more LGBT+ inclusive Parkinson’s research is carried out, to further explore barriers to healthcare, the prevalence of Parkinson’s among the LGBT+ community, and other unique issues experienced by LGBT+ people with Parkinson’s.

It’s also crucial for researchers to make LGBT+ people feel more comfortable about taking part in Parkinson’s research.

Find out more about Parkinson’s research opportunities and where to find clinical trials taking place near you, and join our Engagement Network to receive tailor-made opportunities, including those specifically aimed at the LGBT+ community.

Advanced Parkinson’s and LGBT+

The advanced stages of Parkinson’s bring stress and difficulties for everyone living with Parkinson’s, but there are often additional barriers for LGBT+ people with Parkinson’s due to a lack of inclusivity and lesser legal protections.

Care homes and respite care

Many people with Parkinson’s require assistance from long-term care facilities or short-term respite stays at some point in their life, but these facilities might not consider the needs of LGBT+ patients in their models of care.

Staff are often not trained on the needs of LGBT+ individuals, or even aware that they have LGBT+ patients in their facility, which can lead to unhelpful assumptions and a lack of inclusivity.

Older transgender and intersex people fear disrespect, ridicule, and discrimination from care home settings, which is particularly worrying when they may need to disclose intimate information about their bodies to care home staff.

And because LGBT+ people are more likely to experience isolation, they may also lack support from family and friends in helping them to find a good care home, or in advocating for their care.

When choosing a facility, ask them about their policies around inclusivity for LGBT+ people, and work with them to establish a care plan that works for you.

Legal and financial issues for same-sex couples

In many European countries, there aren’t adequate laws in place giving equal rights to same-sex couples or same-sex marriage.

This can lead to various legal and financial complications for LGBT+ people with Parkinson’s, such as:

Their spouse or partner may not be recognised as next-of-kin in a hospital or care home setting, restricting their ability to be informed about or have a say in their care. This is especially true (although not exclusive to) in countries where no legal recognition is awarded to same-sex partners.
Their spouse may also have greater difficulties being recognised as having power of attorney.
Some European countries do not afford same-sex relationships or marriages the same rights in terms of inheritance, custody or parental rights, tax exemptions or property rights.
They may experience higher premiums on their health insurance

It’s important to research what legal rights you have in your country so that you can be prepared, and consult a solicitor or legal representative to ensure that you have the necessary protections in place, wherever possible.

Do you have information about new research, support groups or initiatives for LGBT+ people living with Parkinson’s? Contact us.

References: research on the experiences of LGBT+ people with Parkinson's

https://www.parkinsonsecrets.com/blog/2021/5/4/lgbt-and-parkinsons-ensuring-equal-access-to-care-for-all-people-living-with-pd-cb7nw

https://cris.brighton.ac.uk/ws/portalfiles/portal/4900692/Health4LGBTI_review_of_health_and_healthcare_inequalities_Author_accepted_version.pdf

https://www.europarl.europa.eu/RegData/etudes/note/join/2010/425621/IPOL-LIBE_NT(2010)425621_EN.pdf

https://www.coe.int/en/web/portal/-/report-highlights-inadequate-healthcare-access-for-lgbti-people-recommends-solutions

https://www.researchgate.net/publication/387440946_The_Healthcare_Experiences_of_LGBT_Individuals_in_Europe_A_Systematic_Review

https://www.alzheimer-europe.org/sites/default/files/2023-01/sex_gender_and_sexuality_in_the_context_of_dementia_a_guide_to_raise_awareness_amongst_health_and_social_care_workers.pdf

Health4LGBTI: Reducing health inequalities experienced by LGBTI people

The images used in this guide are taken, with sincere thanks, from the Ageing with Pride collection in the Centre for Ageing Better’s Age-positive image library.

Supernav Block 1

Latest Parkinson's news

Supernav Block 2

Self-help and living well

Supernav Block 3

Parkinson's Engagement Network

Supernav Block 4

Find events near you