bvFTD is an extremely frustrating diagnosis, you likely don’t feel or notice the effects of it on yourself, and you might even be as spry as ever! But it can feel like you are under much more scrutiny than you ever were before your diagnosis. It is important to remember that your loved ones love you and are trying to do what they can to keep you safe and cared for.

• Find ways to volunteer for causes you care about (Ex. food banks, animal shelters, retirement homes, etc)

• Let your loved ones know how you are feeling and what would make you feel less scrutinized, while also being receptive to what they are experiencing and feeling

• Be open and willing to help move crucial steps forward for your family planning and care. (Ex. Durable Power of Attorney, Living Will, Long-Term Disability, Social Security, etc)

• Be open and willing to enable the preventative measures your loved ones may need to take to protect you and others from the advancement of your diagnosis.

This disease and the actions that need to be taken are NOT a reflection of who you are or your character, but they are only a reflection of the harm that this disease causes. You are loved and can still make a positive impact on the world despite your diagnosis.

bvFTD is a difficult diagnosis to see your loved one go through. It can change them in ways that make it hard to remember who they used to be. Your loved one may be doing or saying things that they never would have before, and it is important to remember that fact. This is the disease, it is not them. Although it is extremely hard to watch, there are things you can do to make sure the impact doesn’t make life more difficult in more ways than it already does.

• Be gracious and forgiving toward your spouse. The disease is not them, or a reflection of the person you married. You love them in sickness and in health, and this is unfortunately a season of sickness. Keep praying for their health, caring for them, and loving them. But with that, your safety is critically important. If abuse is occurring, reach out to authorities (call 911) and work out a solution with other loved ones in your life that can keep you safe.

• One of the most crucial steps is to get your spouse diagnosed. This can be the hardest part, but it is critical to get them the care they need. bvFTD doesn’t often show up in cognitive assessments, especially early on, and it typically needs to have an MRI to diagnose the disease. However, symptoms may occur for years before the disease starts showing brain deterioration. Be persistent, and document behaviors that are put of the ordinary that you can share with your doctors.

• If you and your spouse do not already have these things, work with a lawyer to obtain Durable Power of Attorney and create Living Wills. These will help to make sure you can take care of health, financial, and other important life matters.

• Once you have a diagnosis for your spouse, if they are still working, you can use Long-Term Disability Insurance if the workplace provides it, and/or Social Security even before retirement age.

• Consider joining a support group for spouses of people with FTD.

• BE AWARE of the Medicaid 5 year look-back period. Your loved one may one day need care in a nursing home, yet you may still be working, may have children at home, or are retired but healthy. If you cannot afford to pay the cost of nursing home care, but cannot stay home to take care of your spouse, Medicaid can can cover the care, but limits a spouse to a small amount of assets and uses the rest of your assets for paying for the care. However, when the surviving spouse and the institutionalized spouse have passed away, all remaining assets will be reclaimed by Medicaid through estate recovery, including property. Learn more about what to do here.