The FTD journey can be lonely and isolating. Whether you are caring for a person diagnosed or are living with an FTD diagnosis yourself, you are likely facing a set of struggles that can leave you physically and emotionally stressed. Coping with feelings of sadness, anger, loneliness, or guilt can be overwhelming. AFTD is here to remind you that you are not alone.

For Persons Diagnosed

People living with a diagnosis of FTD may not realize they are depressed. Many feel they’ve lost their sense of purpose. Engaging in a cause or mission you believe in can help – for example, by publicly advocating for FTD treatments and speaking on behalf of persons diagnosed and/or FTD caregivers. Even taking on a new hobby (painting, gardening, crossword puzzles, reading, bicycling) can challenge the brain in new ways.

Talking to others who understand can be incredibly important. AFTD has support groups for those with a diagnosis, so you find support from people in the same situation as you. There are also online groups that offer connection with others diagnosed with dementia.

For Care Partners

It is common to feel physical and emotional stress when caring for another person. As a care partner, you may be so consumed with your loved one’s needs, you may neglect your own. Furthermore, many care partners may feel guilty for feeling burdened by their loved one’s needs and the demands of caregiving. Studies have shown that due to the distinct challenges of this disease, FTD care partners need ongoing formal and informal support throughout their journey so the demands of caregiving don’t become too overwhelming to carry.

Engaging with others, joining a support group, or taking advantage of respite opportunities are all ways care partners can empower themselves to be resilient.

Ways to Manage Stress

For both care partners and persons diagnosed, there are steps you can take to help manage stress, such as:

• Joining an FTD support group
• Joining – or maintaining your existing connection to – a local faith and/or spiritual community, if applicable
• Journaling
• Exercising
• Spending time with friends or family
• Asking for help. (Make a list of ways people can support you – for example, by picking up groceries, or by going on a walk with your loved one so you can take a break. The more specific your list, the more likely others are to offer support.)
• Getting involved as an AFTD volunteer

Caregiver Burnout

Caregiver burnout is a state of physical, emotional, and mental exhaustion. When caregivers experience burnout a change of feelings may occur, where once positive and caring emotions become negative and unconcerned. Caregivers who are burned out may experience stress, fatigue, and depression.

Steps to manage caregiver burnout:

• Take advantage of respite services
• Manage expectations
• Prioritize care for yourself
• Talk to a therapist

Caregiving in a Pandemic

FTD caregiving may be particularly challenging during the COVID-19 pandemic. Dr. Darby J Morhardt of Northwestern University offers creative strategies for coping with the added stress of the pandemic in an Expert Letter.

Click here to read Dr. Morhardt’s advice on facing the challenges in a pandemic.

It Could Be Depression

Many people feel sad, empty, or hopeless from time to time. But if these symptoms occur frequently over a two-week period, you may be experiencing depression. Depression can present with:

• Sadness
• Poor sleep
• Lethargy
• Changes in appetite or weight
• Inappropriate or excessive guilt
• Trouble thinking or concentrating
• Recurrent thoughts of death or suicide

If you feel as though you may be experiencing depression, it is important that you reach out to your doctor. Depression is serious, but it is treatable. If necessary, you can also call the National Suicide Prevention Hotline at 1-800-273-8255.