Q&A: LGBT patients with Alzheimer's disease and their caregivers face unique challenges

Alexia Torke

Currently, 1.1 million LGBT individuals in the United States are aged 65 years or older, and recent estimates have predicted that this population will grow to 7 million by 2030. As more LGBT adults age, this patient population will be faced with increased likelihood for developing Alzheimer’s disease or related dementias.

The National Institute on Aging of the NIH recently awarded a research grant intended to gain insights into the experiences of patients with Alzheimer’s disease who identify as LGBT, as well as those of their caregivers. Patients in this population face specific health care challenges, according to grant recipient Alexia Torke, MD, MS, research scientist at Regenstrief Institute in Indiana.

Healio Psychiatry spoke with Torke about these challenges, what research areas the coming study will address and how clinicians can tailor their practice to welcome patients in this population. – by Joe Gramigna

Question: What challenges do patients with Alzheimer's disease who identify as LGBT face?

Answer: Having an illness such as Alzheimer's disease changes every aspect of a person's experience. As memory and cognitive functioning decline, people increasingly rely on others for support. Initially, this support revolves around banking, finances or driving. As time goes on, the person will likely need assistance with even more basic activities, such as dressing and perhaps even eating. It's a disease where having a caregiver is especially important, and the experience can be challenging for everyone involved.

When a person defines themselves as LGBT, or as part of the LGBT community, there are some additional challenges. One of those challenges is the history of prejudice in the health care system against LGBT individuals, which may result in lower trust of the health care system by these patients. There's evidence that LGBT adults delay seeking care. Even if the health care system has improved in terms of openness and knowledge about LGBT patients, these patients might still be afraid of encountering prejudice when they come to the health care system.

Another important factor is that older adults who are LGBT are less likely to have adult children and are less likely to be married, and therefore might be less likely to have a caregiver or might rely on friends as caregivers rather than relatives.

Q: What prior research has been conducted in this area?

A: There has not been much research at all on this patient population. Other studies have focused on aging more generally and on older LGBT adults, and some of this research has identified that LGBT older adults are more likely to rely on friends rather than blood relatives. We often call this “chosen family.” They might have good friends or even an unmarried partner. Also, the history of prejudice against LGBT patients has been well documented in prior research, which includes everything from comments that feel insensitive to being outright denied care.

Q: How will you conduct your study?

A: Our study is a collaboration between the Regenstrief Institute, Indiana University School of Medicine and the University of Colorado, Denver. We're going to be conducting interviews with the caregivers of older adults about a number of topics, including the experience of being a caregiver for a patient, their encounters with the health care system and whether being LGBT has contributed to the experience in any important ways. The open-ended interviews will really allow the caregivers to tell their stories. The interviews will be audio recorded and we will analyze the interviews for the major themes that arise regarding the caregivers' experiences.

Q: What other areas will your study explore?

A: An important part of being a caregiver of someone with Alzheimer’s is that the patient loses the ability to make major medical decisions. The caregiver is often faced with decisions about the type of care the patient needs, or whether the patient should continue to live at home. They may even make life and death decisions about life-sustaining treatments or whether to enroll in hospice. We sometimes call this serving as a “surrogate decision maker.”

We want to know what this experience is like for caregivers. There's a process called advanced care planning, where the patient and caregiver together can talk about some of these issues and can make decisions in advance. Of course, many aspects of care cannot be anticipated and so the caregiver is often asked to make these decisions when the time arises.

Sometimes when patients are admitted to the hospital, care in an ICU can be quite difficult or even traumatic for the caregiver. The patient might not be wholly aware of what's happening, but the caregiver recognizes this experience. Post-traumatic stress has been documented among some caregivers after hospital stays, and particularly after ICU stays. We certainly don't think this will be the case in all situations, but if it occurs, we want to be able to ask the caregiver about it.

Further, our research and the research of others has shown that for both patients and surrogates, religious and spiritual beliefs can play an important role in making decisions about medical care. They are also an important part of coping with the challenges of serious illness. That's been explored in broad populations but to a much less extent in the LGBT community. We want to determine how religion and spirituality play into the experience of making decisions for the patient.

Q: In what ways are you hoping your research will improve the quality of medical care for incapacitated patients?

A: After we gather this information from caregivers, we want it to be useful. We want to translate it into a format that will help future patients and caregivers as they're thinking about these situations in advance and then help the caregivers as they're caring for the person with Alzheimer's disease. One important part of developing useful tools for people facing serious illnesses is to understand their own perspective, and so we hope that our interviews will inform materials and other education that will help caregivers cope. That may come in the form of videos, decision aids or even programs delivered through a clinic that would help a caregiver. We realize that many aspects of caring for someone with Alzheimer's disease are universal, but there may also be particularities that are important for caring for someone who is LGBT.

Q: What should clinicians know specifically about this patient population?

A: Because of the history of prejudice that particularly the older adult generation has experienced, it's important to make the clinical environment welcoming. As clinicians, we can do that by displaying postings in our office that let people know that they're welcome regardless of their sexual orientation or gender identity. We can do it by asking questions in a way that doesn't assume that a patient’s partner has to be of the opposite sex. Clinicians can ask questions in an open-ended way, such as, “Do you have a partner?”

When the patient brings someone with them to a visit, don't assume the accompanying person is their spouse because they’re a member of the opposite sex, or that they aren’t if they’re of the same sex. You could say, “Who do you have with you today?”

If an older adult who is LGBT is diagnosed with Alzheimer’s disease or anything else that will lead to memory decline, talk with them about naming someone who would be their decision maker if they are unable to make decisions for themselves. In most states, laws specify blood relatives as a priority, and that may not be the right person for someone who's LGBT. Asking these patients who they want to be their decision maker is important, and clinicians can help patients fill out advanced directives to indicate who they would prefer. That's important for all our patients, but it's especially important for LGBT patients.

Q: Is there anything else you'd like to add?

A: Some of our patients who are now at an age where Alzheimer's is likely to develop have lived through a remarkable transformation in terms of gay rights, including the right to marry and the gay rights movement as a whole. They've had a wide variety of experiences, and some have lives in cities where they have very accepting communities. Others have been very secretive or closeted about their LGBT status their whole lives. We should recognize that there's a diversity of perspectives, and we should also be aware of the forms of prejudice that people may face. As clinicians, there's a lot we can do to make people feel welcome and let them know that we're going to provide high quality care for them as they face Alzheimer’s disease.

Disclosures: Torke reports funding from the National Institute on Aging.

Alexia Torke

Currently, 1.1 million LGBT individuals in the United States are aged 65 years or older, and recent estimates have predicted that this population will grow to 7 million by 2030. As more LGBT adults age, this patient population will be faced with increased likelihood for developing Alzheimer’s disease or related dementias.

The National Institute on Aging of the NIH recently awarded a research grant intended to gain insights into the experiences of patients with Alzheimer’s disease who identify as LGBT, as well as those of their caregivers. Patients in this population face specific health care challenges, according to grant recipient Alexia Torke, MD, MS, research scientist at Regenstrief Institute in Indiana.

Healio Psychiatry spoke with Torke about these challenges, what research areas the coming study will address and how clinicians can tailor their practice to welcome patients in this population. – by Joe Gramigna

Question: What challenges do patients with Alzheimer's disease who identify as LGBT face?

Answer: Having an illness such as Alzheimer's disease changes every aspect of a person's experience. As memory and cognitive functioning decline, people increasingly rely on others for support. Initially, this support revolves around banking, finances or driving. As time goes on, the person will likely need assistance with even more basic activities, such as dressing and perhaps even eating. It's a disease where having a caregiver is especially important, and the experience can be challenging for everyone involved.

When a person defines themselves as LGBT, or as part of the LGBT community, there are some additional challenges. One of those challenges is the history of prejudice in the health care system against LGBT individuals, which may result in lower trust of the health care system by these patients. There's evidence that LGBT adults delay seeking care. Even if the health care system has improved in terms of openness and knowledge about LGBT patients, these patients might still be afraid of encountering prejudice when they come to the health care system.

Another important factor is that older adults who are LGBT are less likely to have adult children and are less likely to be married, and therefore might be less likely to have a caregiver or might rely on friends as caregivers rather than relatives.

Q: What prior research has been conducted in this area?

A: There has not been much research at all on this patient population. Other studies have focused on aging more generally and on older LGBT adults, and some of this research has identified that LGBT older adults are more likely to rely on friends rather than blood relatives. We often call this “chosen family.” They might have good friends or even an unmarried partner. Also, the history of prejudice against LGBT patients has been well documented in prior research, which includes everything from comments that feel insensitive to being outright denied care.

Q: How will you conduct your study?

A: Our study is a collaboration between the Regenstrief Institute, Indiana University School of Medicine and the University of Colorado, Denver. We're going to be conducting interviews with the caregivers of older adults about a number of topics, including the experience of being a caregiver for a patient, their encounters with the health care system and whether being LGBT has contributed to the experience in any important ways. The open-ended interviews will really allow the caregivers to tell their stories. The interviews will be audio recorded and we will analyze the interviews for the major themes that arise regarding the caregivers' experiences.

Q: What other areas will your study explore?

A: An important part of being a caregiver of someone with Alzheimer’s is that the patient loses the ability to make major medical decisions. The caregiver is often faced with decisions about the type of care the patient needs, or whether the patient should continue to live at home. They may even make life and death decisions about life-sustaining treatments or whether to enroll in hospice. We sometimes call this serving as a “surrogate decision maker.”

We want to know what this experience is like for caregivers. There's a process called advanced care planning, where the patient and caregiver together can talk about some of these issues and can make decisions in advance. Of course, many aspects of care cannot be anticipated and so the caregiver is often asked to make these decisions when the time arises.

Sometimes when patients are admitted to the hospital, care in an ICU can be quite difficult or even traumatic for the caregiver. The patient might not be wholly aware of what's happening, but the caregiver recognizes this experience. Post-traumatic stress has been documented among some caregivers after hospital stays, and particularly after ICU stays. We certainly don't think this will be the case in all situations, but if it occurs, we want to be able to ask the caregiver about it.

Further, our research and the research of others has shown that for both patients and surrogates, religious and spiritual beliefs can play an important role in making decisions about medical care. They are also an important part of coping with the challenges of serious illness. That's been explored in broad populations but to a much less extent in the LGBT community. We want to determine how religion and spirituality play into the experience of making decisions for the patient.

Q: In what ways are you hoping your research will improve the quality of medical care for incapacitated patients?

A: After we gather this information from caregivers, we want it to be useful. We want to translate it into a format that will help future patients and caregivers as they're thinking about these situations in advance and then help the caregivers as they're caring for the person with Alzheimer's disease. One important part of developing useful tools for people facing serious illnesses is to understand their own perspective, and so we hope that our interviews will inform materials and other education that will help caregivers cope. That may come in the form of videos, decision aids or even programs delivered through a clinic that would help a caregiver. We realize that many aspects of caring for someone with Alzheimer's disease are universal, but there may also be particularities that are important for caring for someone who is LGBT.

Q: What should clinicians know specifically about this patient population?

A: Because of the history of prejudice that particularly the older adult generation has experienced, it's important to make the clinical environment welcoming. As clinicians, we can do that by displaying postings in our office that let people know that they're welcome regardless of their sexual orientation or gender identity. We can do it by asking questions in a way that doesn't assume that a patient’s partner has to be of the opposite sex. Clinicians can ask questions in an open-ended way, such as, “Do you have a partner?”

When the patient brings someone with them to a visit, don't assume the accompanying person is their spouse because they’re a member of the opposite sex, or that they aren’t if they’re of the same sex. You could say, “Who do you have with you today?”

If an older adult who is LGBT is diagnosed with Alzheimer’s disease or anything else that will lead to memory decline, talk with them about naming someone who would be their decision maker if they are unable to make decisions for themselves. In most states, laws specify blood relatives as a priority, and that may not be the right person for someone who's LGBT. Asking these patients who they want to be their decision maker is important, and clinicians can help patients fill out advanced directives to indicate who they would prefer. That's important for all our patients, but it's especially important for LGBT patients.

Q: Is there anything else you'd like to add?

A: Some of our patients who are now at an age where Alzheimer's is likely to develop have lived through a remarkable transformation in terms of gay rights, including the right to marry and the gay rights movement as a whole. They've had a wide variety of experiences, and some have lives in cities where they have very accepting communities. Others have been very secretive or closeted about their LGBT status their whole lives. We should recognize that there's a diversity of perspectives, and we should also be aware of the forms of prejudice that people may face. As clinicians, there's a lot we can do to make people feel welcome and let them know that we're going to provide high quality care for them as they face Alzheimer’s disease.

Disclosures: Torke reports funding from the National Institute on Aging.