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Living with young onset dementia and dealing with depression

The story of Karen and her Mom

Planning for the future looks very different for people who are 65 versus 85 years old, according to Karen Myers, even in relation to people living with dementia. Karen, who herself works in healthcare, provides support to her mother who was diagnosed with younger onset dementia before the age of 65.

“Planning needs are very different and I don’t think health care or social services, when planning for now and ahead, are thinking about the 65-year-olds [living with dementia].”

When people are diagnosed with dementia, whether younger or older, are typically treated the same. However, Karen believes that a distinction should be made for those younger individuals, like her mom. In a lot of cases, people diagnosed with younger onset dementia are still very active, vibrant, and physically well. As such, care and support should enhance and encourage that active and vibrant lifestyle.   Throughout her journey supporting her mother, Karen has found that a lot of resources are for care partners, and about how they can support someone with dementia. However, very little information is directed to people living with dementia themselves and what they can do to continue to live well. 

When Karen’s mom was diagnosed with young onset, her mom became very sad and depressed. Karen knew her mom as a positive, outgoing person, and that was no longer the case.

Just because someone is living with dementia, doesn’t mean they should not be treated for other conditions. But sometimes those things are ignored, according to Karen. Karen advocated for her mom to be prescribed medication to improve her mood and she saw immediate changes.  

When someone is not in that really depressive, gray space it’s easier for them to be physically active, which is really important. A happy person wants to go for walks, and be outside, and do things. We know that depressed people don’t want to do anything. For a person with dementia, obviously their physical health is really important to their cognitive health, and so how do you get somebody moving, is if they enjoy things once again. So, if they always enjoyed looking at flowers, then if they’re no longer in that depressive state, then they’re going to want to look at flowers. Then you can go to a park with lots of flowers and now you’ve got the person walking. 

 

They always push a lot of physical health as being really important when someone is diagnosed with dementia. But, if they are not happy, they’re not going to want to move. When I’m sad I just want to curl up and do nothing, and that is very harmful for a person with dementia. So, the two are really related. I think sometimes [people with dementia] are written off, like you know, it’s normal for a person with dementia to be depressed. Yes, when they are newly diagnosed, but they don’t have to stay in that space. 

Karen believes that everyone should be happy and enjoy life, and despite having a diagnosis of dementia, people should have the opportunity to live their best life for as long as they can.     

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