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I was diagnosed when I was 61. I love to cook and knit. I’m Cindy.

This is my experience. My mother died a year ago after living with severe dementia and being unable to speak for 6 years. I was her caregiver. I started to worry about my own brain about 3 years ago and was diagnosed with young onset dementia when I was 61. I have some problems with memory but that is not the most prominent feature of my dementia. I first started to feel “less firmly located in time and space,” and this has increased.

I love to cook and to knit, but now have trouble following recipes and patterns. Just this morning, I had to throw out a whole batch of buttermilk biscuits. I struggle with planning and carrying out plans. I get disoriented even in familiar places. I fall every couple of months and sometimes have trouble recognizing everyday things.  I have been an avid reader my whole life and now it is unusual for me to finish a book.

I worked advancing Equity and Human Rights for over 30 years and stopped work the day I received the diagnosis. I had been having a hard time keeping up with my workload for several years. I stopped driving and gave up my car a couple weeks ago.

It feels like my life is narrowing and my self is diminishing. But I am fortunate to be surrounded by the love and support of my partner, my family and friends who help me find ways to flourish. I resist making assumptions about dementia and take each day and each moment as they come.





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  • Resist making assumptions about dementia or people living with dementia. Ask someone about their experience. Ask if they need help. If they say yes, ask how you can help them.
  • Remember that we don’t really know what is going on inside for someone with dementia. Some research indicates that there may be more awareness than it may seem.
  • Do your best to include someone with dementia in conversations, plans and activities.
  • Take steps to live a healthy, balanced life. Eat well, get enough sleep and exercise regularly. If you are a caregiver for someone with dementia, these steps are even more important.
  • Do the things you want to do early.