LGBT and Parkinson's: Equal Access to Care
Lesbian, gay, bisexual, and transgender (LGBT), and other sexual and gender minorities diagnosed with Parkinson’s disease (PD) face similar challenges and share the same hopes and concerns as any other person with PD. Besides these shared problems, LGBT individuals may deal with unique challenges. We sat down with Wissam Deeb a UF graduate and movement specialist at UMASS to get a better understanding of these issues and how we can all help. Wissam is a co-author of the recently published book, Living with Parkinson’s.
Wissam Deeb MD is an author movement disorders specialist at UMASS.
1. Can you tell us more about the term LGBT?
The acronym LGBT is commonly used to denote persons who identify as sexual and gender minorities. It includes terms that refer to sexual orientation and others that refer to gender identity. These two concepts are separate. Sexual orientation indicates the person’s physical and emotional attraction. For instance, a man who is attracted to other men may identify as gay. Gender identity refers to the person’s inner sense of their gender. A person whose gender identity matches with their birth sex is referred to as cisgender. A person whose gender identity does not match their birth sex is referred to as transgender. It is essential to realize that a person’s sexual orientation and gender identity occur on a spectrum. The description earlier is therefore a simplification.
2. What are some unique challenges that face a
LGBT individual with Parkinson’s disease?
Despite significant improvements in societal acceptance of LGBT individuals, stigma and discrimination remain a cause for concern for this group. Some people with Parkinson’s may delay or avoid care due to fear of discrimination, and others might receive a lower quality of care. When in a healthcare setting, such as a clinic, a LGBT individual may be faced with the decision of whether they feel safe to “come out” to their doctor and other healthcare team members. The treatment and management of PD is ideally collaborative and inclusive. Involving family members, loved ones, significant others, and other support systems is crucial for an optimal outcome and quality of life. Suppose LGBT individuals do not feel safe to reveal the identity of their significant others or support systems. In that case, we can expect worse outcomes. For example, access to deep brain stimulation (DBS) may be limited as not having a caregiver to support the PWP around the time of the surgery may be a contraindication to receive DBS.
PWP are encouraged to engage in regular exercise and to work with a physical, occupational, or speech therapist— or attend group classes. Also, some PWP may need to be admitted to an inpatient rehabilitation facility or nursing home at some point during their disease course. These are settings in which an LGBT individual might be exposed to stigma and discrimination. An Australian study done in 2010 revealed that none of the nursing homes educate their staff about LGBT individuals. Also, 86% were not aware that LGBT individuals lived in their facilities. This lack of awareness and previous negative experiences may cause LGBT individuals to avoid necessary rehabilitation services. Timing of the onset of dementia is a concern for everyone with PD, but more so for LGBT individuals. They and their significant others, or caregivers, might be worried about inadvertently “outing” themselves.
It is important to remember that LGBT is not a homogeneous group and the needs and challenges vary from person to person. For example, transgender individuals on gender-affirming hormone therapy might have different concerns than cisgender individuals. There is a lack of studies addressing these differences in people living with PD. There needs to be more research in this important area.
3. What can an LGBT individual living with
Parkinson’s disease do to thrive?
Of course, there is no single answer as LGBT persons are diverse with unique needs and circumstances. Being LGBT is only one social determinant of health. It needs to be considered along with socioeconomic status, race, ethnicity, education, religion, language, and cultural background.
Despite this variability, certain general principles can help LGBT individuals with PD thrive.
1. Evaluate the clinic or healthcare institution: It is helpful to check the institution’s or clinic’s website for nondiscrimination and inclusion language. As it remains not federally mandated, an institution that specifies nondiscrimination based on sexual orientation and gender identity may offer a more accepting environment. A review of questionnaires and other distributed material can provide more information. For example, do the questionnaires ask questions about gender identity and sexual orientation? Also, the Human Rights Campaign releases a yearly Healthcare Equality Index about the ranking of the different healthcare institutions.
Moreover, a healthcare institution or clinic that is invested in nondiscrimination would train its staff to avoid assumptions in interactions. You can call the front desk and get a glimpse of the atmosphere through this brief interaction. Some LGBT individuals might feel comfortable asking more direct questions, such as whether LGBT doctors or staff work in the institution. Including LGBT staff on their roster may be indicative of a work atmosphere that is safe for members to “come out” and hence a reflection of their welcoming LGBT patients.
2. Evaluate the doctor. The “old-fashioned” word of mouth approach remains a valuable one. Many LGBT individuals would ask friends for suggestions about LGBT-friendly providers in the area. Besides, there are some online database resources in which doctors and other healthcare providers self-identify as LGBT friendly. These include the Gay and Lesbian Medical Association (GLMA) or Care Dash, for example.
3. Advocacy. LGBT individuals can continue working with their local and national organizations to advocate for more inclusive care and more education for staff. Creating LGBT-friendly or LGBT-driven support groups, as is done through the Alzheimer’s Association, can help. Through such efforts, LGBT individuals will likely feel empowered to engage more in the patient organizations, providing another layer of support.
4. How can healthcare institutions help LGBT
individuals living with PD to thrive?
The principles are similar to what we discussed earlier: ensuring a nondiscrimination policy, educating physicians and staff, and creating an inclusive and supportive environment. Avoiding assumptions is the principle that should guide the work of any healthcare organization and clinic when developing efforts to ensure that all their person with PD, including LGBT individuals, thrive. For example, when a woman with PD presents to the clinic with another woman, rather than assuming that they are sisters or cousins, a well-trained and respectful staff would ask about the relationship as they could be spouses or partners. These are small but essential steps.
In 2021, it is imperative that we remain dedicated to improving access to excellent care for all PWP. We should work together to increase awareness of the issues facing the LGBT community and how to provide more informed care to meet all PWP where they are.
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.