Caregiving for Parkinson's and Dementia

Both Conditions Combined: Parkinson’s and Dementia

I'm writing to family members of someone who's living with both Parkinson's Disease and dementia.

You'll note, it's not uncommon for people already living with Parkinson's to develop dementia later in the course of their disease.

This is the case of my father, so I'll be the first to acknowledge how emotionally challenging the process can become.

Where to look for specific information?

• Should you look for Parkinson's related information first?
• Should you look for dementia related information first?
• Is there a complete school of care which pertains specifically those people living with both Parkinson's and dementia?

"Informal Caregivers" like myself seek solid learning resources pertaining to the elder care of both Parkinson's and dementia combined. The purpose of this post is to explain how exceptionally challenging this double-condition is to care for at home, by yourself, without outside help.

These are incurable conditions, and your feelings about them matter.

When the Parkinson's limits mobility and the dementia impairs cognition, what's a caregiver to do?

Overwhelm is common in circumstances like this. You could even call it "Living Grieving", like the "Living Funerals" which have gained popularity in the 2020s.

If you have strong negative feelings about someone having both Parkinson's and dementia, who could blame you?!

Let's not wallow in the pits, and instead rise up to the challenge.

Caregiving Techniques Specialized for Parkinson's and Dementia

Caregiving for someone living with both Parkinson’s and dementia is a special cocktail of ADLs and confused grieving.‍

Graycare is NOT a doctor. My family has first-hand experience trying to figure it out. I can try to say what people in these circumstances are feeling, and put it here for my friends to know.

• Which facts should caregivers of both Parkinson’s and dementia should know?
• Which risks are people with Parkinson’s and dementia are at especially high risk for?
• Which professional specializes in both Parkinson’s and dementia?

One difference between me and a caregiver complainer, is I go find the best answer I can, and put it here for my friends to know.

Researched Fact: Dementia is common for People with Parkinson's

• Between 60-80% of people diagnosed with Parkinson's will eventually develop dementia [1, 2]
• People with both Parkinson’s and dementia have high risk of accidental injury, because dementia makes you more apt to accidents by poor judgment, and because Parkinson’s makes you less able to control your body
• Caregivers of Parkinson’s and dementia must manage both the physical symptoms of Parkinson's as well as the cognitive symptoms of dementia.

[1] “The epidemiology of dementia associated with Parkinson disease” Dag Aarsland, Martin Wilhelm Kurz (J Neurol Sci, 2010)

[2] University of California Weill Institue for Neuroscience

You can see why something like this can become extra stressful.

What is the medical field which specialized in the overlap of Parkinson’s and dementia?

To the best of my knowledge there is no specific type of care dedicated solely to the treatment of both Parkinson's disease and dementia together. Contact me if you know the answer.

Many metaphors have been used to describe the grief felt when watching an aging family member's decline. In the case of Parkinson's and dementia and my dad, here's just one example from me: It feels like your dad is turning backwards into a fussy toddler with strong preference.

"Memory Care" is for Dementia and Alzheimers, but not specifically for Parkinson's (I think...)

Certainly certain divisions of memory care which is a type of care associated with dementia Alzheimer's As an industry as many professionals who specialize in patients with dementia and Parkinson's both.

Neurologists are brain specialists who specialize even more into movement disorders like Parkinson's. You'd probably be able to find some doctors with experience treating simultaneous Parkinson's and dementia, but it's likely hard-to-find in most parts of America, and expensive if you do.

Frustrating Circumstances for Family Caregivers of Complex Aging-Related Conditions

A clear resolution, when managing at home care for a family member with not one but two incurable conditions, is difficult to attain.

It’s harder to get good information, in my opinion.

It's more expensive to get care, in my experience.

UPDATE: This blog post was originally posted with a tone of "complaining about my circumstances". In October 2023, this post was revised and re-published to become more helpful to people facing these circumstances.