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In this episode, I do a deep dive talking about a requested topic: dementia. It can be hard to find good information and advice about dementia online, so I hope that this episode can serve that function.
This deep dive episode was prompted by a question that I got via email. I have done an episode about dementia in episode 29. This was a professional talk about dementia that I gave to a group of police officers. It was alright, but not perfect for this context. So today, I want to do a lot better. This is actually right in my wheel house. My “day job” is as a neuropsychologist, which means that each week I test people’s thinking skills such as memory and language to look for issues such as dementia. I work with a lot of older adults, but also people who may have had a brain injury, seizure disorder, parkinson’s etc.
Here’s the question:
Anyways, I would love to hear more about dementia (I listened to your dementia lecture on the podcast already). One reason I think it would be interesting to listen to is because my spouses grandparent has some form of dementia. We don’t know what type and I’m not sure that we ever will. His family is very “old school” and “traditional”. They don’t talk about these things ..and if they do it’s super secretive. Unfortunately the grandparents spouse isn’t handling the dementia well. Yells, gets annoyed, won’t talk about it, doesn’t assist enough etc. Recently my spouses parents realized the dementia was worse that they realized. And finally everyone concluded that the grandparent clearly has some form dementia. They don’t know official info about the diagnosis because the grandparents want to pretend it’s not happening.
I’d love to hear some dementia advice for families. How to deal with it. Basic education. What to look for in their family member etc.
So let me first address the fact that the way dementia has been talked about has changed a lot over time. If I see an older adult right now and their parent probably had a history of dementia, they were likely not diagnosed with anything specific. They were just called senile. A lot of times people and even medical professionals will write off dementia as just being old. One thing that I need to make super clear from the start here is that dementia means that someone has difficulties beyond what is expected for their age.
There are normal changes that happen with aging. You tend to think a bit slower due to blood vessel changes in your brain. You also start to have some minor wordfinding difficulties where the word you are looking for is just out of your grasp, but it typically comes back after a minute. In a normally functioning older adult, these changes should not cause a severe disruption in their life. It’s an annoyance, or even something humorous for the family, but a normally functioning older person should still remain mostly independent for quite a while if they don’t have other significant medical issues.
Many people don’t really understand the terminology surrounding dementia. The frustrating thing for me is that even medical professionals often get this wrong. It’s really not too complicated. So let’s break it down.
- Dementia is a category of functioning.
- There are many things that can cause someone to get dementia.
- Dementia is not a disease.
- Some people with diseases that can cause dementia do NOT have dementia (yet).
So what sort of things can cause dementia?
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Alzheimer’s
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Parkinson’s
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Strokes
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Cerebrovascular disease/diabetes
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Brain injuries
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Frontotemporal degeneration
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Lewy Body disease
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AIDS
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Mad cow
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Anything that causes permanent impairment or progressive degeneration of the brain.
When looking at dementia conditions, we want to break it down into a few different categories.
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Progressive vs stable
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Cortical vs subcortical
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What area of the brain is affected?
Dementia conditions obviously can cause impairment in
thinking abilities that can interfere with life, but they can also cause behavioral issues such as depression and isolation or inappropriate behavior.
Let’s take a few examples
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Alzheimer’s
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Progressive cortical degeneration mainly affecting the temporal lobes and hippocampus
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Starts off mildly impaired and innevitably progresses to dementia
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Spreads throughout the brain. First STM, then language, then LTM, then exec, then basic functioning
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No cure, medications are only slightly effective in helping mask symptoms
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Aphasia – vague language, paraphasias, trouble understanding, can also be seen in writing
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Frontotemporal degeneration
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Similar to Alzheimer’s except that it begins in the frontal lobes of the brain.
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There are a few variants of this, but often the first changes are actually behavioral.
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Frontal lobe and behavior/personality
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Difficult behaviors – disinhibition, inappropriateness, impatience, impulsivity, compulsive behaviors, delusions
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Eventually affects memory as well. In the end, Alz and FTD look very similar.
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Strokes/brain injuries
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ischemic, transient ischemic, hemorrhagic
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TBI/mTBI/Concussion
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Can have varied affects depending on where they were located in the brain
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frontal injuries cause similar issues to FTD
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repeated TIAs can cause inefficiency and diffuse subcortical damage
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Most often, attention and speed of thinking are impacted by these
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Parkinson’s/Lewy Body Disease
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Disease where a specific part of your brain stops producing enough dopamine.
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Causes physical symptoms such as tremor, gait difficulties etc.
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For about half of people, they also develop cognitive difficulties
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Subcortical deficits – slowed processing speed and attention, overall inefficiency
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LBD – physical, hallucinations, fluctuation – visuospatial difficulties
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Those are just a few examples. Even within those, there are still subdivisions. There are different types of frontotemporal dementia and there are other parkinsonian conditions like PSP that have different effects. This is why it’s so important to get evaluated and do your do diligence. They all have different effects. They all have different outlooks and progression. Some of them are treatable and some are not. Dementia is not normal aging and it’s not all the same thing. Don’t group it into one catch all alzheimer’s category.
How do you get a diagnosis or start figuring this stuff out?
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Start with primary care
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They may refer to a neurologist
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Unless it’s abundantly clear what’s going on, they should refer you to a neuropsychologist like me
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Comprehensive assessment
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Looking for patterns of performance that would indicate a specific condition
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It’s usually through a combination of looking at the history, brain imaging, lab work, and neuropsych testing that we can tell if there is dementia going on and why.
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There are sometimes false trails
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UTIs
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vitamin deficiencies
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severe depression or other psychiatric difficulties
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Go to appointments with your loved one – provide the information that they need.
So let’s talk about some difficult issues with dementia. It is inevitably tough – both for the person who is suffering from dementia and for their loved ones.
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Lack of insight – can seem like stubbornness or denial
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Important to manage your own frustration.
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elevated emotions make it even harder for them to function
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Repetitive questions
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Dealing with this depends on their type of impairment.
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Is there a strength that you can tap into
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Building routines/habits – white board techniques
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Sometimes its okay to just reassure/redirect
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Inappropriate behaviors
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Can try to set boundaries, but may be limited by their ability to understand their behavior or their ability to remember
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May need to simply limit their access to children, bank accounts etc.
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POA vs Conservatorship/Capacity
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Unsafe driving
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Medical doctors can suspend licenses
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Make sure that you drive with them sometimes if they think they are a safe driver
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vague explanations for minor damage to car etc.
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This is a tough one – if you need to limit their access to the car etc. try to have an alternative plan in place to help them maintain some level of independence
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Adaptive driving evaluations
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Decreased ability to care for themselves
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Refusing care
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Can be extremely difficult if they have a lack of insight
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Helpful to get others within the family or other professionals on board
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Try to frame it in a way that fits with their personality – personal assistant vs caregiver
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Start with the least intrusive interventions and step up from there
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May need to step in and strip their ability to make decisions if they are very resistant, which sucks
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Delusional thinking
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Distraction/redirecton
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Not going to convince them otherwise typically
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medication can help with this and general agitation
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Caregiving classes often available
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Self-care and caregiver burnout
Resources that are available:
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Feedback sessions with professionals who help with the diagnosis
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Alzheimer’s association
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Caregiver support networks
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Books and online resources
Thanks for listening!
Interested in having Duff answer a question on the podcast? Email Duff at robert@duffthepsych.com and maybe you’ll hear it on a future episode!
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