Diagnosis questions

elewis33

I mentioned in my first thread that I'm not a primary caregiver for my MIL, but I want to try to be informed and helpful when I do interact with her.

What I'm curious about is the diagnosis of dementia, from a qualified medical professional. My sister-in-law has medical power-of-attorney for my MIL, and she and her husband are her primary caregivers, which means my SIL takes my MIL to her doctor visits. My wife and I have never gone to a medical appointment with them.

We've had conversations about what seems like rudimentary testing by my MILs GP, but to my knowledge she's never been tested or diagnosed by a specialist. Because of this we have scant information to go on about my MILs dementia and the what, why's and how's.

With that background, here are a couple questions:

Does the type of dementia (the cause) make any difference in how caregiver's should interact with the PWD?

Is it important to get a proper diagnosis of the cause of the dementia? It seems to me like everyone just assumes that my MIL has dementia, for whatever reasons, and we just need to deal with the consequences day by day.

Isn't a proper diagnosis required to get a PWD into a proper care facility, where they can get the kind of help they need?

Given all of this, how do I go about getting the rest of my MILs family engaged in the kinds of conversations that need to happen, to get her the care and placement that she will ultimately need?

H1235

In my situation moms PCP did a quick cognitive test then referred her to a neurologist. The neurologist did an hour long test and some blood work to rule out anything treatable (the pcp may have ordered the blood test). Based on her symptoms they believe mom has vascular dementia. It has a slightly shorter life expectancy and she is expected to progress in steps vs a steady decline. I believe that many are diagnosed by a pcp and given the vague diagnosis of dementia, especially if the person is in a later stage. It must be frustrating not having specifics, but I don’t really think it would change much. A specific diagnosis will not change how you interact with her. I don’t know why a diagnosis would be necessary for placement in a facility. Unless she has (I think it’s called) a spring form DPOA (doesn’t go into effect until a doctor signs papers to activate) I don’t know that there is a need. Sorry, but I would trust her primary caregiver.

On this website in groups under new caregivers there is a lot of information. I recommend “understanding the dementia experience” and the staging tool. These may help with where she is at and what is yet to come.

Quilting brings calm

Has your wife offered to go with her sister to the appointment? Even if she went, you often don’t get told much. Even mom’s NP in the neurology area would just tell me her 10 minute test score, watch her walk for a few minutes and say see you in six months. ‘she has mild cognitive impairment’. When I knew she had mild dementia.
You do not need a diagnosis to place someone in assisted living. There’s not much in the way of treatment - mostly anxiety and depression meds, and later anti-psychotics.

This forum is great place for you to learn helpful tips and techniques to help your SIL- who will need breaks from her mom.

mabelgirl

I think it’s great you are wanting to learn about dementia and proper care. I assume it is alongside your wife. If I understand the relationship it’s your wife’s mother. In my family the 7 of us siblings are in concert with moms care with varying degrees of involvement. This was not always the case and we had to make a change about 2 year ago. The “in law” siblings basically supported the sibling. While I wholeheartedly believe the family should discuss and agree on plan to care for mom, I do believe it’s the children of the PWD responsibility to make it happen.
There is a lot of information on this site about dementia. You’ll learn there is not a definitive cause. The diagnosis of type is based more on behaviors and loss of functions. There are drugs to help slow progression usually more effective in early stage. The primary caregiver will have a tough job regardless of the type of dementia and there is no one single way to do anything. The PWD personality, history, preferences , culture and habits affect how the caregiver responds. Know that unless you live with the PWD you can not truly appreciate the effects of the disease on the person or on the caregiver. Arm chair quarterbacking her care will not be helpful. Offer help as much relief to sil as possible.
Whether your MIL is moved to a facility , imlo should be a decision the family makes. It will take everyone in the family to have frequent visit if this route you go. Just because a person has dementia does not mean they cannot be cared for at home. I so wanted my mom to remain with me but unfortunately her changes made it too much of a strain on the family. We moved her to ALF to provide her the care and safety she needed and we visit frequently. Prayers for wisdom and understanding.

harshedbuzz

@elewis33 asked:
Does the type of dementia (the cause) make any difference in how caregiver's should interact with the PWD?

Not usually unless the dementia is an alcohol-related one in which policing access to alcohol is part of caregiving.

Is it important to get a proper diagnosis of the cause of the dementia? It seems to me like everyone just assumes that my MIL has dementia, for whatever reasons, and we just need to deal with the consequences day by day.

Dementia is a blanket term that covers a range of progressive cognitive declines. How important an accurate diagnosis of type may or may not be important. Normally a PCP orders the blood tests and imaging to rule out conditions that mimic dementia but may be treatable— lesions, vitamin deficiencies, hormone issues. Beyond that, it may or may not be useful to know the cause. If the PWD is in very early stages and interested in an infusion medication, then testing specific to Alzheimer's would need to be done. It would be important in NPH, which is quite rare, which is reversible for many. NPH overlaps dementia symptoms, but the onset of incontinence and gait issues is very early and very striking.

Having a comprehensive evaluation might not change anything. If the PWD is older, I might be less inclined to push for it. Dad had the soup-to-nuts evaluation at a university teaching center. My dear friend's mom saw only their PCP. The treatment— medication for anxiety and behavior issues— and progression were nearly identical.

Seeing the specialist at the memory center was helpful to mom because 1) she was in terrible denial about dad's condition and 2) she had a need to say she got him the best available care after ignoring his symptoms for nearly a decade. It was not helpful for dad. He hated the appointments and testing. He hated the specialist putting restrictions on him. He even hated getting up early, getting stuck in traffic and paying for parking. We added a geripsych for psychoactive medications— he had a better bedside manner and dad enjoyed their appointments. The PCP who treated my friend's mom is my mom's PCP as well and I can say she is lovely to work with, so my friend's mom was not upset by her appointments.

Isn't a proper diagnosis required to get a PWD into a proper care facility, where they can get the kind of help they need?

Do you mean a memory care facility? If so, having a POA and a doctor to sign off was all we needed. When we placed dad, his PCP signed off. Interestingly, the DON is the one who generally decides if the facility will accept the PWD as a resident. The medical exam the doctor signs is very similar to the ones my son needed for sleep-away camp— vaccines and current meds mostly. I don't recall anything about cognitive abilities.

Given all of this, how do I go about getting the rest of my MILs family engaged in the kinds of conversations that need to happen, to get her the care and placement that she will ultimately need?

I can appreciate the frustration about feeling somewhat out-of-the-loop. DH and I went through this with his mom's final years. It wasn't easy not to be consulted. She'd rightly named her oldest son, a physician local to her, as POA. He didn't do things exactly as I would have, but the care and thoughtfulness that drove his decision-making meant she got excellent care. In the 4 1/2 years she lived with my BIL and the 18 months during which she needed care in a SNF, I traveled to their home 2-3 times each year so they could travel while mom was looked after. Doing this helped them and it gave me (and DH) a sense of participating in her care. Since I had HIPAA clearance, her doctors could talk to me on the rare times I needed to take her to an appointment.

Now that I've been the POA for my parents, I can appreciate the advice to resist the temptation to play armchair QB. Weighing decisions burns a lot of emotional energy and frankly, I didn't have spoons left at the end of the day to discuss with others. I had an uncle who did nothing more than a 45-minute drive-thru visit every month or two who had a lot of opinions. It soured our relationship.

At the end-of-the-day, the POA gets to decide. They do not need to consult anyone else, nor do they have to defend their decisions. These conversations that you think need to happen, don't. Ideally the POA does loop the successor agent into what's going on in the event something happens to them, but otherwise no.

HB