Alzheimer’s and the LGBT communities

Dick and Carol and Bruce and Jim have all recently been diagnosed with Alzheimer’s or some other cognitive-disease state. They are our spouses, friends, partners, parents and family members. What the heck is going on here? All of a sudden it seems there are so many people around me being diagnosed with some type of

memory disorder. Something is happening and we need to deal with it.

While there are no scientific or medical differences between LGBT and non-LGBT people with cognitive-disease states, there are significant differences in the social, legal and financial support structures between the two populations. For LGBT people, those differences can be major obstacles to care and support, not only for the patient but for the caregivers as well.

In 2013, 15.5-million caregivers provided an estimated 17.7-billion hours of unpaid care valued at more than $220 billion. For LGBT people, caregiving looms even larger as an issue than these statistics might indicate.

Most LGBT older adults live alone, and have no life partner or children. Many are also estranged from their biological families. As a result, LGBT older adults rely on their “families of choice” for support and care and, generally, they are in the same age range and face their own challenges as they age. Because we are not always able to care for our LGBT friends and loved ones, LGBT older adults rely more heavily on services provided by outside agencies.

Relying on outsiders for care and support raises the ongoing issue of fear and mistrust of the medical establishment and care services we need as we age. So what do we need to do to make sure that we receive the proper care when we need it?

The LGBT Elder Initiative met with several care providers in the aging-services network who also work in LGBT communities. We wanted to know what questions we need to ask of care providers to make sure our friends and loved ones will get the most sensitive, competent care possible while navigating this challenging issue.

Alzheimer’s is a person-centered disease. Having someone come into your home is a very personal situation and you want to make certain that the agency/caregiver is capable and LGBT culturally competent. You want to be certain the person/agency you engage with is sensitive to your unique needs as an LGBT person/couple and whether their staff is trained in LGBT cultural sensitivity. According to Cathy Warshaw, executive director of Innovations Home Care, “cultural-competency training” is necessary because “you can’t provide services to anybody unless you understand their culture.”

Few can afford in-patient “memory unit” care from longterm-care facilities. Most rely on friends and family and a combination of adult day care, home care and, for caregivers, respite-care services. But again, many LGBT people are cautious about these types of services because of past discrimination and negative experiences with the health-care system.

There are some basic steps that we can take to determine if a care provider is safe and welcoming to LGBT patients and their caregivers. Innovations’ Warshaw says, “If you call somebody and don’t feel comfortable, call somebody else and call somebody else and call somebody else. Follow your gut.”

Mindy Mozenter, director of community outreach for Home Instead Senior Care, said most providers “see a human in need” and give the best care possible with no concern about sexual orientation or gender identity. Mozenter recommends that word of mouth, a personal recommendation, is one of the best ways to determine the quality of a care provider and if he or she is LGBT-sensitive. She also recommends answering the following questions about providers before accessing their services:

• How many years have they been in existence?

• Are the home-care workers employees of the agency or just temporary workers?

• How much training do they receive before they see their first client?

• What follow-up supervision is given after a caregiver starts a first assignment?

• What is the quality-assurance evaluation process?

• Do they have an assessment process to match the client with the appropriate caregiver? What is that assessment process?

• Are they licensed, bonded, insured, and do they offer workman’s comp and require employee drug testing?

For more information and care and support resources about Alzheimer’s, dementia and other cognitive-disease states, contact the Alzheimer’s Association at 800-272-3900 or Philadelphia Corporation for Aging at 215-765-9040.