LGBT Elders and the Power of Person-Centered Dementia Care

In this blog we will discuss diversity focusing on how we can all best serve our LGBTQ elders. In doing so we are looking at yet another layer of honoring and providing person-centered care.

I don’t believe being gay to be a choice. I do believe it is who the person is and a part of their fabric. It is as authentic of a truth as a person’s race or age. It is very difficult and painful to deny. And yet it may be difficult to live openly and authentically because, being in a minority, it opens the person up to the potential of being discriminated against, judged, or shunned.

A person who is LGBT often faces unique challenges at every phase of life. When young, coming to terms with being LGBT can be very difficult because our sense of self and self-esteem is so fragile and forming during this early phase of life. Young people often look to others to validate their thoughts and their worth. They want to fit in and be included. This is a very vulnerable time and far too many teens struggle or even commit suicide because they don’t feel accepted.

According to The Trevor Project:

LGBTQ youth are more than four times as likely to attempt suicide than their peers. “LGBTQ youth are not inherently prone to suicide because of their sexual orientation or gender identity but rather placed at higher risk because of how they are mistreated and stigmatized in society.”

This statistic makes me very sad on so many levels.

For far too many, life doesn’t get easier. Throughout adulthood, discrimination and bias may persist. However, hopefully the adult is stronger and better able to cope. Unfortunately, the pendulum may swing again in the direction of greater vulnerability as they become LGBT elders.

LGBT elders are vulnerable, but for different reasons than a child who is in those formative years. In general, as we age, we may become more dependent upon others due to physical or cognitive support needs. Being gay may have been something a healthy, independent adult was able to keep secret. But keeping one’s life private may be much more difficult when older and facing physical and cognitive challenges or experiencing loss and grief.

Due to their own health issues or those of a loved one, elders often need to use the health care system more frequently. They may spend more time managing their health with their physician and other health care professionals. They may be hospitalized and at some point, they may need to hire care staff to come into their personal home or may move into senior living. The veil of protection and secrecy one may have chosen to wear may need to be lifted during one or more of these personal and very private encounters with health care providers.

LGBT elders have a difficult choice: keep one’s private life private or reveal it and risk being a victim of discrimination. There are risks on both sides of the decision.

When dealing with difficult health situations LGBT elders may be spending energy and time finding ways to avoid sharing privately held information about one’s identity or a partner. This is downright draining. Again, I think it is so sad to think that at one of the most vulnerable times in a person’s life, fear or discriminatory practices may play a central role in the story.

Imagine for a moment what this could feel like to hide or even dispose of a photo of a lifelong partner. Imagine the sorrow of not being able to be at your loved one’s side during important medical visits or hospitalization. Imagine the pain and despair of not being comforted by health professionals, colleagues, neighbors, friends or even family when your lifelong partner faces a grave health situation or passes away. So which decision do you think has the potential to be more painful: To hide and suffer alone, or to reveal the truth and to risk discrimination?

Of course, if LGBT elders are living with dementia, there is no choice to keep a secret because the filter and reasoning abilities are likely no longer functioning normally. Therefore, hiding real feelings or putting plans in place to hide one’s true identity or authentic life may not be possible. Perhaps losing the cognitive abilities that hid their truth could be a blessing in disguise, assuming LGBT elders with dementia encounter loving, supportive and non-biased health care team members committed to delivering person-centered care. One can only hope this would be their fate.

Let's take a deeper look at dementia and some unique challenges faced within the LGBT community.

Prevalence of Dementia in LGBT Elders

There are many older LGBT Americans living with dementia today and there will be many more tomorrow. According to the Alzheimer's Association, 7.4% of the lesbian, gay and bisexual older adult population is living with dementia and by 2030, there are going to be 7 million LGBTQ+ older adults 65 or older.

Additionally, research led by the University of California, San Francisco found that LGBTQ Americans were 29% more likely to report memory loss and confusion—two early signs of dementia—than their straight, cisgender counterparts.

Unique Challenges in Receiving Needed Support for LGBT Elders

Any person experiencing symptoms of dementia or diagnosed with dementia will need to access health care services and receive support to live safely and with quality of life. But who will provide that support? This is an area in which LGBT elders may be at a disadvantage. Let’s explore three concepts related to accessing support.

1. What/Who are the Available Support Systems for our LGBT elders?

According to the Alzheimer's Association, 34% of LGBT elders live alone. Sage, an advocacy group for the aging LGBTQ+ community, found that LGBT elders are 4 times less likely to have children, and more likely to be estranged from family members.

Why are these statistics so impactful?

In American society we often see a daughter take the lead in managing their parents’ needs when facing a disease like dementia. They may provide support in a variety of ways, including giving some or all of the care, hiring care staff, finding senior living, etc. How do all these needs get met if support from children isn't available?

And as shared, to further the dilemma, 34% live alone, therefore may not have a life partner. This would be another likely person to take the lead on addressing the variety of needs related to living with dementia.

Without these familial support systems, LGBT elders become more reliant on other close relationships. A good friend may be there during a time of need. Without the legal rights and protections that sometimes are easier within family units, pre-planning is important. LGBT elders should plan ahead and identify their wishes and create a Trust and set-up the needed power of attorney documents. This may be important for most people, but it is especially important for the LGBT community since they may not have the typical go-to support systems of a spouse or children.

2. Real Concerns of Discrimination.

Many LGBT elders live in fear of discrimination and unfortunately it is well-founded given the reality. And this fear of discrimination may limit their use of health care.

We've already talked about this a bit and sadly there are many reports of discrimination faced by LBGT elders. As one example, a few years ago a resident of a senior living facility in Illinois filed a claim, because she alleged, that once other residents, who once befriended her, learned she was a lesbian, they began to harass and even physically attacked her. She said that she attempted to report these incidents of harassment and abuse to facility administrators, but rather than taking action to address the ongoing discrimination, the staff marginalized and alienated her and retaliated against her for complaining about the harassment. It was at this point that she contacted the Lambda Legal Help Desk.

In July of 2016, Lambda Legal filed a complaint on her behalf under the federal Fair Housing Act, which prohibits discrimination on the basis of sex as well as the Illinois Human Rights Act, which prohibits discrimination on the basis of sexual orientation and sex. This is just one example of the battle against LGBT discrimination being waged. There are many more.

There would likely be greater desire to move into a senior living community if there was a real commitment to LGBT equality and inclusivity. I admire organizations who have demonstrated this commitment such as Aldersgate in Charlotte, North Carolina who has built a community for all, including their LGBTQ+ residents, their family and friends and Aldersgate teammates. They employ a Chief Diversity, Inclusion and Equity Officer, they train their staff, and they employ specific best practices.

I definitely see a win-win here. LGBT elders are looking for residential communities that are welcoming. Finding senior housing that is welcoming is one of their top concerns. If more communities do the work and commit to creating a trained workforce and a welcoming environment, LGBT elders can explore safer, higher quality options, and the senior living facility can improve its census as it reaches this growing population of elders. This is a win-win.

I recently learned of the Long-Term Care Equality Index which supports a community by providing access to self-assessments that measure the degree of its LGBTQ inclusiveness and other established benchmarks. Check it out. They offer many tools and resources to assist senior living communities who want to make this commitment to being welcoming and inclusive.

How can we help to reduce LGBT elder discrimination? All of us who work in health care are called upon to serve a diverse population.

First, as a health professional we must remember we have an ethical responsibility to not let personal bias impact the provision of care. For example, as an Occupational Therapist, one of our code of ethics principles, Autonomy, requires an Occupational Therapist clinician to recognize personal biases and not alter services based upon personal values or opinions. I assume other professions have similar ethics laws. We must all be aware of our code of ethics and commitment to honoring our ethical principles and respectfully caring for each person we serve.

Next, we must simply remember a value to live by, which is to treat others as we would want to be treated. Empathy goes a very long way in fighting discrimination. It is important to know that, while someone may not approve or agree, we can still put ourselves in the other person’s shoes and rise above. How much better of a world would it be if we all treated others as we want to be treated, no matter what our differences? Discrimination would be halted in its tracks as we embody kindness and caring for all.

3. Preventing Isolation by Simply Being There.

As we age, socialization becomes a vital part of healthy living for many reasons. If LGBT elders don’t have strong bonds with their family unit or friends, they risk living a very isolated life and this can have dire consequences.

And, if LGBT elders have a partner or other loved one living with dementia, they too will require support. Support will help optimize health and well-being as they experience the emotional losses that often accompanies the journey of having a loved one with dementia and can help reduce the stress of caregiving.

The social and support value found within one’s biological or chosen family unit is a critical factor in helping to reduce isolation. Let’s face it, we all want to tackle the challenges that can accompany aging and/or dementia, by being held, supported, and comforted by loved ones.

To go it alone, that is to age alone in a secretive life, is just a devastating thought. But when surrounded by loved ones who lend an ear or a helping hand, being there for day-to-day assistance or emotional support, it is uplifting and can help to create well-being for all.

The health care team also plays a key role in reducing isolation. If we are welcoming at the doctor’s office, in the hospital or in home care or senior living, the ability to trust and feel safe grows. 88% of LGBT elders say they would feel more comfortable with providers trained in LGBT needs. If you are a health care team member, get to know the person in care and their family, and treat all with the respect, kindness, and dignity.

In summary, whether you are a loved one of a LGBT elder or a health care team member, please know you are sharing pivotal moments in their life. You play a vital role in their health and well-being. What you do or don’t say, what you do or don’t do, penetrates far beyond that moment of interaction. You have an opportunity to be a lifeline or a dagger. The choice is yours, and it matters.

LGBT Elders and Dementia: A Friends’ Story

I’d like to share a personal story. I had two good friends, a lesbian couple, who were together over 30 years. They were afraid to tell their children and the rest of their family their truth. They only shared their story with a few close friends that they knew would support and understand, and luckily, I was one.

Navigating the health care system when one developed dementia was very challenging. The healthy partner had power of attorney, but this was always a battle with the daughter who wanted control because she was family. The battles ensued from who would make the care decisions to where this person would be buried. You see that keeping the relationship a secret now created problems. It was very draining on top of the entire experience of having a loved one declining with dementia.

But at the very end an angel arrived in the form of a hospice nurse. She saw the tenderness between these two women and asked the question, “Are you partners?” The healthy partner was able to respond, “Yes, this is true.” The nurse encouraged them to make a commitment to one another before the partner with dementia passed. The nurse witnessed the private ceremony in which the words that had long been felt so deeply in their hearts but never spoken, were now said aloud, in the company of a witness.

This story exemplifies one of the most powerful gifts to arise from person-centered care. I can't imagine one that could matter more. Thank you to those who offer their hand and heart to all. Our LGBTQ community needs you more than you could ever know.

Kim Warchol, OTR/L, is the founder and President of Dementia Care Specialists at Crisis Prevention Institute.

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