Dan's story: Legal and financial tips from a family with familial Alzheimer's disease

Some of the most valuable and meaningful insights a person can receive when facing familial Alzheimer's disease (FAD) come from within our community. 

In this interview, we hear from Dan, a member of the Youngtimers community who has four family members who have tested positive for FAD genetic mutations, two of which are symptomatic. Dan is not a lawyer or a professional financial advisor, but he has been personally involved with each of siblings on their journeys with FAD. In this interview, he shares a lot of the expertise he has developed on legal and financial planning in the face of FAD.

In this interview, Suzanne, a board member of Youngtimers, talks with Dan about:

  • Paying for care: Insights into Medicare and long-term care insurance

  • Creating an ideal support and care team

  • Talking to employers about symptom onset

And more!

This conversation reflects Dan’s unique perspectives and experiences as shared with us on March 16, 2021. His story is his own, and it adds a valuable chapter to the diverse narratives within our Youngtimers community.

This transcript has been edited for clarity and readability. For the full interview, watch the video.

SUZANNE: Hi, I’m Suzanne from Youngtimers. Thank you for joining us today. Dan, why don't you tell the audience a little bit more about yourself? 

DAN: Thank you, Suzanne, and thanks for having me on. I'm happy to talk about my family's journey and the resources that we used to navigate it. 

Dan has four family members who have tested positive for FAD genetic mutations.

First and foremost, I've been privileged to actually be asked by my family members to help them on their individual journey. As Suzanne said, four of my family members have tested positive. I am personally involved with each and every one of them on their journey, and with the two that are symptomatic, I have helped them through the process as a result of a genetic research study that we've been involved in. 

This is a terrible disease, and I'm going to talk about what it takes to get through this–not in the medical terms, but in the personal terms. How do I manage my life from a legal and financial perspective? 

This is US based, but the topic could be applied in other countries. When I talk about the government programs, other governments may have comparable programs. 

Key Principles

Considerations for taking care of yourself and your family:

  1. Be patient with yourself. You need to take care of yourself from a medical perspective. That is job number one. 

  2. Take your time, and be very deliberate in your actions. 

  3. Be honest with yourself, with your family, and others in terms of your illness.

  4. But, be careful. Determine when, what and how to tell people, because it will impact your legal and financial affairs as well as your mental health. 


The journey of Alzheimer's
Phases of planning and living with the disease

Alzheimer’s is a progressive disease, and your needs will change over time. Many people experience the following stages in their journey:

  1. You think you might have it. You suspect you might have Alzheimer’s disease, either due to testing, symptoms, or family history. 

  2. Your doctors establish a cognitive baseline. At some point, you'll go through a level of testing to establish what's known as a baseline. Your baseline mental condition is very important, because as cognitive impairment takes over, you're going to experience a decline in your cognitive abilities and memory capabilities. Your baseline is what allows a medical team to measure your decline. 

  3. The time comes to start telling people. At some point, you've experienced enough decline that you need to start talking to people outside of your immediate family and friends. You may still be able to do your job, but it’s time to inform your employer. 

  4. You need accommodations to keep working. As your symptoms get worse, things at work may need to change. The term that's going to get used is “accommodation.” You may be able to continue to work, but only with accommodations. As soon as you say the word accommodations, that's a big transition point. At some point you will not be able to do your existing job, but you should not quit your job due to your disease. Certain avenues of financial and legal resources will immediately be eliminated, like your disability insurance, your medical insurance, etc. Before that happens, make sure you have talked to your employer.

  5. The end of your employment. Finally, your employment will end and you will need to focus on enjoying the remainder of your life while dealing with a disease. 

Identifying your support team

This is not a journey that you go on alone. You need to assemble a team of people. It's going to take some time and some effort by everybody. Your team needs to have three types of affairs covered:

  • Medical care and life decisions 

  • Financial affairs

  • Legal affairs

You’ll need at least two people to work on your behalf. Typically, you're going to find somebody that's responsible for your medical, mental health and life decisions, and then you're going to find somebody else that can help you with your legal and financial affairs. That's a pretty natural split. 

Choosing the right support team

When choosing your team, here are some considerations.

  1. Trust. You need to be able to trust each team member, regardless of what subject area they're going to help you with. 

  2. Subject matter expertise. Either they have it, or they have the ability to get it or find resources to support you. 

  3. Teamwork. The people supporting you need to work on your behalf as a team. Teamwork is important. 

Not everybody needs to be local. One of my siblings is local, one is not, and I've been able to do this for both. In my case, I've helped with their medical, financial and legal affairs, and eventually, I've gotten somebody to take over for both of their medical care, but I still am responsible for their financial and legal affairs. 

Taking Action, a guide from the Alzheimer’s Association

There’s an abundance of resources available to help you get your affairs in order. Groups like the Alzheimer's Association and the National Institute on Aging offer a lot of resources.

In particular, there's a wonderful guidebook from the Alzheimer's Association called Taking Action. It's a 45-page booklet that addresses every step in the journey. Start there. Take a look at the book and figure out how you're going to do that. Work it through prior to onset, if possible. Work through it with your entire team, hopefully, at the same time. 

One of the things that you'll find is, you end up talking to so many people, you have to tell the story over and over again. It's better to get everybody on the same page in the same conversation, because at some point you're not going to remember who you talk to and what you talked about. 

At the end of this article, you’ll find more resources I recommend to help you on the journey. 

Insurance and familial Alzheimer’s disease

Before I get into the financial and legal piece, I want to set a baseline understanding around insurance. You need to know what insurance coverage you already have, as well as what insurance you can get. So let's talk about some definitions. 

Interested in sharing your own story?

Learn more about contributing to our community story series.

First, there is what's known as income replacement. These are typically known as short- and long-term disability insurance. [Editor’s Note: Income replacement is a type of insurance that provides financial support by covering expenses if a person can no longer work due to disability or illness.]  You've all seen the Aflac Duck commercial. That's an income replacement program. 

There are different types of income replacement insurance, which include private programs, employer programs, and government programs. 

  • Employer programs. Most often, if people are employed, they have the ability to get short and long disability through their employer. 

  • Private programs. You can [also] buy [a disability insurance policy] in the open marketplace. 

  • Government programs. In the US, government disability insurance is also known as Social Security Disability Income (SSDI). [More about SSDI below]

So [these programs make up what is] called income replacement. If I get sick, will that replace some of my income? 

Next, you have medical insurance. That can be through your employer, through private programs, or through the government. Government medical insurance is split into two components. There is Medicare and Medicaid. 

  • Medicare: If you have been diagnosed with Alzheimer’s and you receive SSDI, you are eligible for Medicare 2 years after you begin receiving SSDI, regardless of your age. Medicare currently starts at age 65, but I have one sibling that is 60, and she is on Medicare. She started receiving Medicare coverage two years to the month after she received her first SSDI check. Medicare is an important part of the journey, because now, your medical insurance gets a lot less expensive. 

  • Medicaid: Medicaid is a government program for those with limited income and assets, who qualify as “in poverty”. For some people, Medicaid covers long term care, either at home, in a medical facility, or nursing home.

    [Editor’s Note: There are limitations on what Medicaid covers, and who will accept it. Families must consider quality of care as one variable when determining the best care strategy for their loved ones.]

    • The Medicaid “spend down”. People who have a pension or 401(k) may choose to “spend down” those assets in order to qualify for Medicaid.

      [For Medicaid eligibility] you typically need to spend down to a certain level. For example, you would need to restrict your liquid assets [things you own, cash you possess] to less than $2,000. So if you've got money, a house, or cars, and you want to qualify for Medicaid, you would need to divest those assets over time.

      Time is important, because the Medicaid rules have what's known as a lookback period. In every state besides California, [the lookback period] is five years. They'll look back and ask, did you give money away? Did you gift cars or assets to family or friends below low market value? Did you give your house to your brother or your mother?

      [Editor’s note: The amount that can be gifted in the US without incurring gift taxes is limited on an annual basis and a lifetime basis, so advanced planning is needed. Learn more about gift taxes.]

      In the process, it's important that you manage your financial and legal affairs so that you don’t bankrupt your entire family, as opposed to bankrupting yourself. There are resources out there that allow you to learn more what this means for your specific situation.

      Learn more about the medicaid “spend down. 

    • Using a Trust. In my personal journey, I have helped my siblings with their financial and legal affairs. We have set things up such that property and real estate assets are no longer in their name. They're in the name of a trust that I'm involved with.

      People hear, ”estate planning and trust” and most people have never done it. It's not that big a deal. You can do it yourself, or you can seek resources or an attorney once you've made those decisions. And I think it’s really important that you do get somebody involved that's done it. 


The last type of insurance I'll talk about is what's known as Long Term Care Insurance. This is different from disability [insurance], because it isn’t meant to replace income. Long Term Care Insurance is a program that pays for the help you need with activities of daily living, or ADLs. There ares six specific activities of daily living, which include the ability to:

  1. Move from one position to another and walk independently.

  2. Feed oneself.

  3. Select appropriate clothes, and put the clothes on.

  4. Bathe and groom oneself and maintain dental hygiene, nail, and hair care.

  5. Control bladder and bowel function

  6. Get to and from the toilet, use it appropriately, and clean oneself.

Learn more about long term care insurance in our interview with XX.


Taking caution about privacy and medical records

If you have discussed your [family’s history of Alzheimer's, your FAD mutation, or your Alzheimer’s symptoms] with your primary care physician or anyone that has medical records, these records could be requested by the long-term care insurance company and may make it difficult for you to qualify for long care insurance. 

If you are part of the population that has [familial] Alzheimer's disease, you might choose to have genetic testing done through a research program, or out of your own pocket rather than through insurance. 

[If you decide to find out your genetic status], I’d suggest: 

  1. Keep it private as long as you can, and keep it off the grid. If you do genetic testing through a research program, do not in any way, shape or form give that genetic testing lab your insurance information. They don't need it. If you're doing it through research, insurance is not going to pay for the testing. Unfortunately, I’ve had situations where we gave them their insurance information because we were just filling out forms. Don't do that. 

  2. You can talk to your doctor about it, but tell your doctor: “Do not, under any circumstances, put this in my notes. This is a private doctor-patient conversation. I need you to help me with my medical care. But I don't want this to go in the notes because if it's in the notes, the insurance company, the Long Term Care Insurance company, is going to see it and deny me.” 


SUZANNE: So, can long term care actually be denied to people who are at risk for [familial] Alzheimer's disease? Or is it offered at a very high rate? 

DAN: I have never heard of it being approved. I personally applied for long care insurance, and got it before my genetic testing. I did the testing, found out I was negative, and then dropped the insurance. But I had it just in case. Because I know what that journey can cost, and it's exorbitant. 

Financial planning

“I have been honored to be able to help my siblings. It’s a gift they have given to me, not the other way around. ”
— Dan

Let's talk about financial planning again. There's lots of good resources available, but again, The Alzheimer’s Association’s “Taking Action” workbook is helpful. 

You need to find out where you're at financially. You need to assemble: 

  • What are your assets? 

  • What are your liabilities? 

Put that together, and work with your designated team member to figure out what you need to do on your journey when you become symptomatic 

Legal planning

Secondly, you need to get your legal affairs in order. You may need:

  • A will

  • A trust (more often than not)

  • An advanced directive for health care. In other words, what do you want to happen medically?

  • A power of attorney. Who's going to take over and be responsible for making decisions and act on your behalf legally? That can be laid out in a trust that an attorney will recommend.

  • To assign property

In my case, for both of my siblings, we made arrangements to get their real estate out of their name so that long term, the lookback period start date was either before their onset, or early in their symptom onset. They each have financial resources, but that's not going to last forever. They're both young, and as you will find out, medical or long term life assistance is expensive. Both nursing homes and in-home care.  You'll get to a point where it's part time, but eventually it will become full time, and possibly they'll need to move into a facility. 

So now, you know what the journey looks like. You've assembled a financial plan, you know what your assets and liabilities are, and what your financial future looks like. And then, you've got the legal things set aside. 

Talking to your employer

So let's go back to the workplace. You need to decide:

  • Who am I going to tell?

  • What am I going to tell them? 

  • When am I going to tell them? 

There are great resources out there on how to talk to family members, how to talk to friends, and how to talk to people to whom you have responsibilities. More than likely, the hardest one to tell is going to be your employer.

You need to be very careful how you tell your employer. You're going to notice symptoms before they do. Start a log of examples of when you forget things or situations that people would remember things that happened that aren't normal and because of your disease. My sister has assembled multiple pages. She is still asymptomatic, but she actually has talked to her employer’s HR. She hasn't talked to her employer on the record, so to speak. She has talked to their HR off the record. 

There are employer rules that protect you because of your disease. I won't go into those right now, but you need to know that talking to your employer is difficult. You need to figure out when and how to do it. 

In two of my siblings’ cases, I actually went in, talked to their immediate management as well as their HR to talk about the disease because in both situations they couldn't. My siblings could not. But they had noticed their symptoms at work. 

Under no circumstances should you resign your job because of your disease. You need to stand up for your rights and say, I know I'm getting forgetful. I have a disease. I need some level of accommodation. 

As soon as you say the word accommodation for what you do in your daily job, that's a big trigger point for them. They have a legal obligation to accommodate if possible. But sometimes, it's just not possible. If you're in a technical role, a leadership role, or in fact, any role, you're going to need your cognitive abilities and memory. 

Once you've told your employer, there's going to be a point where symptoms are obvious. Either you get accommodation, or you don't. Hopefully at that time, you've got your financial insurance affairs in order so you have disability insurance for income replacement. Even if you have that, you will also be applying for what's known as Social Security Disability Income (SSDI), 

One thing that a lot of people miss: Let’s say your disability insurance says that you get $5,000 a month, or $60,000 a year. If your Social Security Disability Income pays $1,500 of that, you don't get them both. You're going to get $1,500 from SSDI, and you're going to get $3,500 from your disability insurance. Because disability insurance guarantees that you'll get $5,000 a month. And so SSDI would pay $1,500, and your insurance company would pay the $3,500, on average. 

SUZANNE: How long did your siblings work after the diagnosis? 

DAN: My [younger] brother worked for over five years. He was in what most would consider a blue collar job. They made accommodations for him. They were wonderful. Great employer. We approached it right. They had great people involved. 

My sister, from symptom onset, I would say [she worked for] two years.

My oldest brother was also diagnosed while he was working. He was the first of our siblings to start having Alzheimer’s symptoms. It was difficult for him, because he had just changed jobs inside the same company, and he had a great track record, but all of a sudden he couldn't learn new things. In his old job, he could lean on 20 years of experience doing X, but he got a promotion into a new job and he couldn't learn the new skills and manage the team. 

So he went in for medical and then we got involved in a research study. He found out his diagnosis. My father had it, and his mother had it. 

That's one thing in this journey I found. There's one thing to know that it runs in your family. There's another to know it's in your blood, literally in your genes. So that's a big deal. 

Applying for SSDI (Social Security Disability Insurance)

Let's talk about applying for SSDI. SSDI is your friend. I met with [people from] Social Security on my siblings behalf, over a year before we applied. I wanted to know what the process was. I wanted to talk to people that knew the rules. What would we need in order to apply? 

“Compassionate allowance is a government definition that says if you have specifically early onset Alzheimer’s, you will be on a fast track for SSDI approval.”
— Dan

I filled out all that paperwork with the assistance of my family member well in advance of the day that we made the submission. This is terribly important. There's what's known as “compassionate allowance”. Compassionate allowance is a government definition that says if you have specifically early onset Alzheimer's, you will be on a fast track for SSDI approval. If you have the medical records, if you have the DNA records, it's a given. You will be approved very quickly. In our case, it was less than 30 days on both accounts. I had all that stuff prepared, and I hit the go button one month before they left their job. 

One thing that you will find with SSDI is you can actually continue to work, but there's an income limitation of [a certain amount] per month. The limit changes every year. That’s what my brother did, on reduced hours, so he was able to get SSDI, plus some incremental income working part time. 

Once you've applied and you've been approved, there's a waiting period. I think it's 60 days, and then the checks start flowing. But you need to wind down your income to a point where you could apply. And those rules are well defined. There are resources from the Alzheimer's Association, and there's an SSDI checklist [available] as well. 

SUZANNE: So with the three [siblings] that you've worked with, is there anything you wish you would have done differently between working with the first sibling and then the third? 

DAN: Yeah, I learned a lot in the process. The thing I would have done differently is, I would have activated the property and real estate transactions as soon as I knew which way things were going to go. Because that starts the five year clock. And in my sister's case, we didn't do that as quickly as we probably should have. 

Seek legal assistance to make sure that the trust is set up in a way that you can transfer the assets. 

The other thing is, the cost basis for real estate is important. My brother has lived on his property for over 20 years. He bought it for X. It's now worth 2X if he sold it or gave it away. In this case, we literally did a title transfer to my mother, because my mom will die before my brother. She’s 89 years old. Several years ago, we transferred the title of the property to her, because the cost basis when it transfers to the trust after she dies will re-establish the cost basis at a new market price for 2X [due to United States estate tax law]. If my brother had just transferred the title to his children, it would have gone through with the cost basis as X, and when they sold the property, capital gains on all of that. 

Again, I don't want to get into the weeds, but that's why you need a legal attorney and [they’ll be able to  talk to you] about property cost basis and title transfer. 

SUZANNE: Very helpful. Is there any other final advice you have for people?

DAN: The other thing is make sure you understand the different types of insurance that you currently have, as well as the ones that you could buy on the open market. The government has reams of rules that I won't go into, but I learned a lot in the process 

It's not a fun journey. It's not an easy journey, but it's a journey that everyone needs to take. And the sooner you start the journey, the better off you're going to be once the person becomes symptomatic. 

If they live alone, I would strongly encourage people to go to the US Postal Service and have their mail routed to the person that has financial responsibility. [When] my brothers became [symptomatic], we set up auto pay on most of their bills, so we weren't getting penalties. I was also added to all their financial accounts 

SUZANNE: Definitely. So that was something that you learned, a very good piece of advice for the audience having the mail rerouted early. 

Dan: You know, if the person lives alone, if you have a spouse or family member that you're living with you know, obviously that makes it easier. But, setting up your financial affairs to be on auto pay. Because now I'm doing it for myself, two of my siblings and my elderly mother. It gets a little complicated, right? 

SUZANNE: Dan, thank you so much for offering [your advice] up to the group for everybody to have as a reference, as well as talking about your experience. Your family's very lucky to have you.

DAN: I sincerely wish everyone well on their journey. 

My final piece of advice: Assemble your trusted team. Ask for help. I have been honored to be able to help my siblings. It's a gift they have given to me, not the other way around. 

Dan’s resource recommendations

From Alzheimer’s Association

About Medicaid

About Social Security

About employment with dementia

Financial Planning after Diagnosis

Youngtimers

Supporting those impacted by familial Alzheimer’s disease with community, education and advocacy

PO Box 151035
San Rafael, CA, 94915

info@youngtimers.org