Genetic counseling

[NF52]

The truth of the matter is, I'm afraid that if I share my genetic information with insurance companies, they will assume that I am destined to develop Alzheimer's, and therefore treat me like an Alzheimer's patient. I'm afraid that the state or some other agency will step in and make me their ward, and I will lose the right to make any decisions for myself. Maybe I'm paranoid, I don't know. On the other hand, I want to get a headstart on this. I want some personalized guidance, which I can only get from an expert.

People with a risk gene for Alzheimer's disease, or biomarkers of amyloid or tau associated with Alzheimer's, or those who have mild cognitive impairment, or those who have a diagnosis of dementia due to Alzheimer's disease, or any other disease or injury (like traumatic brain injury) can NEVEr had an agency step in and make them their ward, nor can the state. I personally know a number of people in ALL of these categories and they continue to live lives with meaning, purpose, goals, and contributions to their families and communities, including babysitting grandchildren, singing and playing the guitar in a community band, speaking to lawmakers and policymakers at the local, state and federal level and to large conferences, and traveling in this country and others with minimal support.

My mother actually had a court-appointed "limited guardianship" at the age of 86, during the last 6 months of her life with moderate dementia, while living alone, at the request of my siblings and me. Our goal was not to take away her right to make any decisions on her own. In fact it was to safeguard the decisions she had made in writing for many years, but had forgotten, leading to financial abuse from her varying ability to remember or understand how or why she had given people large sums of money. It took several months, extensive pre-hearing meetings with us siblings and my mother herself by a lawyer appointed by the court to make a recommendation on her behalf, and meetings with her own long-time estate lawyer who argued for the limited guardianship on our behalf. The result was that her long-time certified public accountant, who had done her taxes for over 20 years and who she stated in court that she trusted, was appointed guardian of her property (meaning her financial assets). She still lived at home until the last two months of her life when heart failure led to the need for skilled nursing, and she no longer had to think about who she was writing checks to.

It might reassure you to read an excerpt from The U.S. Department of Justice Elder Justice Initiative: Guardianship Overvie

Why do courts appoint guardians?
A court may find that a person needs a guardian because:

• They are not able to make critical decisions about their personal and/or financial affairs on their own;

• there are no alternative arrangements in place (such as a power of attorney for finances or a health care advance directive); and

• without court intervention the person or their resources would be at risk of substantial harm.

Before appointing a guardian for someone, a court must determine whether the person meets the legal definition of incapacity based on medical, psychological and other evidence about the individual’s decision-making ability. There are many conditions that may impair a person’s decision-making ability. The most common conditions are:

• dementia

• intellectual disability

• mental illness

• head injury

• substance use disorder

The fact that a person has one of these conditions does not by itself mean they need a guardian. Even people with significant cognitive challenges may be able to make decisions for themselves, especially with technological assistance and support from people they trust.

What are the types of guardianship?

• A guardian of the person makes personal decisions for the person subject to guardianship, e.g. choosing health care and treatment, deciding where to live, and deciding who visits.

• A guardian of the property makes financial decisions, such as decisions about money, investments, real estate, debt, and making gifts.

• A court may grant a guardian authority to make both personal and financial decisions.

• In a plenary or “full” guardianship, the guardian can make virtually all decisions for an individual, but in a limited guardianship, the guardian only has certain decision-making powers specified in the court order.

You can get personalized guidance on being a healthy adult, but no one should promise you that they can see 60 years into your future. I hope you consider talking with someone who can support you with this knowledge; you need to see sunshine in your future--and I say that as someone who today met my new granddaughter, born this morning. At 72, I have a sunny view of my future!
Nancy

[rdpchef]

The truth of the matter is, I'm afraid that if I share my genetic information with insurance companies, they will assume that I am destined to develop Alzheimer's, and therefore treat me like an Alzheimer's patient. I'm afraid that the state or some other agency will step in and make me their ward, and I will lose the right to make any decisions for myself. Maybe I'm paranoid, I don't know. On the other hand, I want to get a headstart on this. I want some personalized guidance, which I can only get from an expert.

I'm always concerned with sharing of my Apoe status as well. I told my GP but asked him to keep it out of my chart which I know he honored, the same goes with my FM doctor.
I do have LT health care that we purchased about 4 years ago. If you could afford it, purchasing as young as they'll allow it would be much less expensive. I'll can put mine in my will if it's never used. At least I wouldn't lose what I paid into it with the exception of any money I would have made had it been invested.

As many others have mentioned, you are starting so young by taking care of yourself. I didn't learn I was Apoe4 until I was 56 and I feel good that I learned at that point.

rdpchef

[Eniluap]

The truth of the matter is, I'm afraid that if I share my genetic information with insurance companies, they will assume that I am destined to develop Alzheimer's, and therefore treat me like an Alzheimer's patient. I'm afraid that the state or some other agency will step in and make me their ward, and I will lose the right to make any decisions for myself. Maybe I'm paranoid, I don't know. On the other hand, I want to get a headstart on this. I want some personalized guidance, which I can only get from an expert.

People with a risk gene for Alzheimer's disease, or biomarkers of amyloid or tau associated with Alzheimer's, or those who have mild cognitive impairment, or those who have a diagnosis of dementia due to Alzheimer's disease, or any other disease or injury (like traumatic brain injury) can NEVEr had an agency step in and make them their ward, nor can the state. I personally know a number of people in ALL of these categories and they continue to live lives with meaning, purpose, goals, and contributions to their families and communities, including babysitting grandchildren, singing and playing the guitar in a community band, speaking to lawmakers and policymakers at the local, state and federal level and to large conferences, and traveling in this country and others with minimal support.

My mother actually had a court-appointed "limited guardianship" at the age of 86, during the last 6 months of her life with moderate dementia, while living alone, at the request of my siblings and me. Our goal was not to take away her right to make any decisions on her own. In fact it was to safeguard the decisions she had made in writing for many years, but had forgotten, leading to financial abuse from her varying ability to remember or understand how or why she had given people large sums of money. It took several months, extensive pre-hearing meetings with us siblings and my mother herself by a lawyer appointed by the court to make a recommendation on her behalf, and meetings with her own long-time estate lawyer who argued for the limited guardianship on our behalf. The result was that her long-time certified public accountant, who had done her taxes for over 20 years and who she stated in court that she trusted, was appointed guardian of her property (meaning her financial assets). She still lived at home until the last two months of her life when heart failure led to the need for skilled nursing, and she no longer had to think about who she was writing checks to.

It might reassure you to read an excerpt from The U.S. Department of Justice Elder Justice Initiative: Guardianship Overvie

Why do courts appoint guardians?
A court may find that a person needs a guardian because:

• They are not able to make critical decisions about their personal and/or financial affairs on their own;

• there are no alternative arrangements in place (such as a power of attorney for finances or a health care advance directive); and

• without court intervention the person or their resources would be at risk of substantial harm.

Before appointing a guardian for someone, a court must determine whether the person meets the legal definition of incapacity based on medical, psychological and other evidence about the individual’s decision-making ability. There are many conditions that may impair a person’s decision-making ability. The most common conditions are:

• dementia

• intellectual disability

• mental illness

• head injury

• substance use disorder

The fact that a person has one of these conditions does not by itself mean they need a guardian. Even people with significant cognitive challenges may be able to make decisions for themselves, especially with technological assistance and support from people they trust.

What are the types of guardianship?

• A guardian of the person makes personal decisions for the person subject to guardianship, e.g. choosing health care and treatment, deciding where to live, and deciding who visits.

• A guardian of the property makes financial decisions, such as decisions about money, investments, real estate, debt, and making gifts.

• A court may grant a guardian authority to make both personal and financial decisions.

• In a plenary or “full” guardianship, the guardian can make virtually all decisions for an individual, but in a limited guardianship, the guardian only has certain decision-making powers specified in the court order.

You can get personalized guidance on being a healthy adult, but no one should promise you that they can see 60 years into your future. I hope you consider talking with someone who can support you with this knowledge; you need to see sunshine in your future--and I say that as someone who today met my new granddaughter, born this morning. At 72, I have a sunny view of my future!
Nancy

I have made an appointment with the Weill Cornell Alzheimer’s Prevention Clinic. I’ve also bought a membership with Function Health.

[Eniluap]

The truth of the matter is, I'm afraid that if I share my genetic information with insurance companies, they will assume that I am destined to develop Alzheimer's, and therefore treat me like an Alzheimer's patient. I'm afraid that the state or some other agency will step in and make me their ward, and I will lose the right to make any decisions for myself. Maybe I'm paranoid, I don't know. On the other hand, I want to get a headstart on this. I want some personalized guidance, which I can only get from an expert.

People with a risk gene for Alzheimer's disease, or biomarkers of amyloid or tau associated with Alzheimer's, or those who have mild cognitive impairment, or those who have a diagnosis of dementia due to Alzheimer's disease, or any other disease or injury (like traumatic brain injury) can NEVEr had an agency step in and make them their ward, nor can the state. I personally know a number of people in ALL of these categories and they continue to live lives with meaning, purpose, goals, and contributions to their families and communities, including babysitting grandchildren, singing and playing the guitar in a community band, speaking to lawmakers and policymakers at the local, state and federal level and to large conferences, and traveling in this country and others with minimal support.

My mother actually had a court-appointed "limited guardianship" at the age of 86, during the last 6 months of her life with moderate dementia, while living alone, at the request of my siblings and me. Our goal was not to take away her right to make any decisions on her own. In fact it was to safeguard the decisions she had made in writing for many years, but had forgotten, leading to financial abuse from her varying ability to remember or understand how or why she had given people large sums of money. It took several months, extensive pre-hearing meetings with us siblings and my mother herself by a lawyer appointed by the court to make a recommendation on her behalf, and meetings with her own long-time estate lawyer who argued for the limited guardianship on our behalf. The result was that her long-time certified public accountant, who had done her taxes for over 20 years and who she stated in court that she trusted, was appointed guardian of her property (meaning her financial assets). She still lived at home until the last two months of her life when heart failure led to the need for skilled nursing, and she no longer had to think about who she was writing checks to.

It might reassure you to read an excerpt from The U.S. Department of Justice Elder Justice Initiative: Guardianship Overvie

Why do courts appoint guardians?
A court may find that a person needs a guardian because:

• They are not able to make critical decisions about their personal and/or financial affairs on their own;

• there are no alternative arrangements in place (such as a power of attorney for finances or a health care advance directive); and

• without court intervention the person or their resources would be at risk of substantial harm.

Before appointing a guardian for someone, a court must determine whether the person meets the legal definition of incapacity based on medical, psychological and other evidence about the individual’s decision-making ability. There are many conditions that may impair a person’s decision-making ability. The most common conditions are:

• dementia

• intellectual disability

• mental illness

• head injury

• substance use disorder

The fact that a person has one of these conditions does not by itself mean they need a guardian. Even people with significant cognitive challenges may be able to make decisions for themselves, especially with technological assistance and support from people they trust.

What are the types of guardianship?

• A guardian of the person makes personal decisions for the person subject to guardianship, e.g. choosing health care and treatment, deciding where to live, and deciding who visits.

• A guardian of the property makes financial decisions, such as decisions about money, investments, real estate, debt, and making gifts.

• A court may grant a guardian authority to make both personal and financial decisions.

• In a plenary or “full” guardianship, the guardian can make virtually all decisions for an individual, but in a limited guardianship, the guardian only has certain decision-making powers specified in the court order.

You can get personalized guidance on being a healthy adult, but no one should promise you that they can see 60 years into your future. I hope you consider talking with someone who can support you with this knowledge; you need to see sunshine in your future--and I say that as someone who today met my new granddaughter, born this morning. At 72, I have a sunny view of my future!
Nancy

So in a nutshell, I have to be diagnosed by a medical provider in order to meet the legal definition of incapacity? And I would have to display symptoms of memory loss in order to receive a diagnosis?