Vision care for dementia, need advice

NuttyProfessor

My mom is well into her moderate Alzheimer stage now, still conversant but would have a hard time cooperating with an eye exam.  And she's very mobility restricted now, takes only small shuffling steps with a walker.

She's been having problems with vision lately, and I wanted to take her to an opthalmologist.    The lovely man who took care of her and the rest of our family for decades has now retired, so now I have to find a new ophthalmologist.   It's IMPOSSIBLE!!!!  All the practices I called have absurd restrictions, like making patients wait outside and not allowing anyone other than the patient into the office.  No exceptions for elderly/dementia, they could care less.  Then there are the ones whose offices are in buildings with stairs.   The ones I called that didn't have such issues are booked for months, well into 2023.

Is there a "recommended" list of specialist practices that are dementia/elderly/handicap friendly?  I can't imagine anything quite that organized or convenient, but it would be nice to get some pointers.

I guess the answer is that dementia patients can't have eye exams, but that doesn't seem right in a first world country like the US.   Our medical system is just awful....it's all about the money and physician/office convenience now.  I bought a vision card on Amazon and I'll test my mom myself...hoping to save us the trouble.  Seems like that may be all I can do.

mommyandme (m&m)

You might call your county’s Office On Aging, they may have a recommendation.  Or even your local Alzheimer’s association.  

My daughter, who works at a vision center, said the optometrist there could just examine my mother’s eyes, without the vision tests.  My mother would not be able to understand or answer to the testing.  I’ve always gone to an Ophthalmologist but am considering the Optometrist route now.  Maybe there’s an Optometrist that could help with your mom too and at least rule out something new or serious.  They may have time to get you in sooner? 

Good luck! 

HollyBerry

My mom couldn't transfer independently from a wheelchair to the chair at the opthamologists office, but they still saw her quite a few times, with great care and respect.  I like the suggestion of starting with your ADRC or Alzheimers group, but also consider asking her primary care doc or geriatrics team who they recommend.  We had insurance connected with the university hospital, so we had access to all their resources.  Do you know anyone who has a child with special needs?  we saw a lot of kids and even more seniors in the waiting rooms for the specialists who saw my mom. 

harshedbuzz

NuttyP-

This is where a local support group comes in handy. They generally know the best options in your area. Unless she has a known condition that requires an ophthalmologist, I would be open to a Doctor of Optometry if that's whose name comes up.

FWIW, my mom (who is frail elderly-- broken foot at the moment--but no dementia) sees 2 different ophthalmologists (one for each eye- macular degeneration and a damaged optic nerve) every 6 months and an optometrist. The former are very strict about me being with her in COVID-times, but the optometrist is breezier about me being there. Of the 3, he's also the best with her and I think it's because he's the optometrist affiliated with the county nursing home. It'll be easier to get in and they would likely get you in with a specialist faster if needed IME.

What sort of issues is she having. Sometimes visual issues are about perception or processing and now how the eyes are working. 

HB

NuttyProfessor

Nice suggestions, thanks!  Starting from our dementia specialist & local Alzheimer's chapter sounds good - also, starting with an optometrist not bad either.  I also asked some neighbors and a local physician I know personally.

My mother has been complaining of blurred vision and I've also seen her bumping into things.   I thought a medical exam is important to rule out things like glaucoma, macular degeneration, or even retinal detachment as she's suffered several falls.   But, she also has a bit of watery eye from blepharitis since she's started refusing to shower, and it's all the aide can do to get her to shower once a week. 

So, I talked to the aide and bought eyelid cleansing wipes.  She'll do that twice a day, and see if that doesn't clear things up.  I can research potential places to take my mom to in the meantime.

Iris L.

Before the appt, it may help for you to read about visual agnosia, to help distinguish visual difficulties.

Iris L 

dayn2nite2

I’m healthy and the wait for my glaucoma exam was 6 months.

I’d book an appointment for her in 2023 at one of the accommodating ophthalmologists knowing it’s likely not her eyes, but her brain’s ability to process what she’s seeing.

harshedbuzz

NuttyProfessor wrote:

My mother has been complaining of blurred vision and I've also seen her bumping into things. 

Dry eye and cataracts can also cause blurry vision. Sometimes people with dry eye will go through a phase where they water a lot but the tear quality is poor. A prescribing optometrist can treat the former and diagnose both. 

Bumping could be associated with reduced peripheral vision related to dementia vision changes. She might also be looking down rather than forward or bumping into objects avoiding dark objects her brain now perceives to be open space or even holes. 

I thought a medical exam is important to rule out things like glaucoma, macular degeneration, or even retinal detachment as she's suffered several falls.

An optometrist does normally test for glaucoma as part of an exam. Mine also does a retinal imaging that would show a detachment or the start of macular degeneration. One thing I always did with dad with dementia, and even with my mom without it, is to think long and hard about what we would do with the information obtained by testing. 

A detached retina is an emergency. Best results come from a procedure done quickly- within a few days. If she detached one in a fall a while back, the "Hail Mary" procedure to attempt to re-attach and preserve some vision would likely be a scleral buckle or gas procedure which would be difficult for a PWD to follow through with (Dad had a detached retina) and maybe offer some ability to sense movement and light. 

As I recall your mom is fairly elderly. Macular degeneration typically would progress fairly slowly and there is no treatment until it transitions to "wet" AMD and injections are offered.  Dad had mild AMD and by mid-stage we abandoned yearly checks for him. My mom has more significant issues, for now all the fancy specialist can offer is a quick check and some vitamins. (Bausch & Lomb AREDS 2)

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Iris L.

I could use this eye compress for my dry eyes.  Thanks for sharing, Victoria.

Iris

​fesk

I recently found a group of physicians that come to the home. They told me they have an optometrist as well. I haven't had to schedule that appointment, but this is something you may want to check into.

caregiving daughter

I recall the eye doctor being one of the most difficult specialty practices to work through. At our doctor, who is known to be very strong clinically, you move from room to room, chair to chair, to progress through the exam. The movement was beyond difficult not to mention the need for at least two bathroom stops that would need to happen given we were there for two and a half hours. My suggestion would be to call around and find someone with empathy for a senior or pwd. Beg for alternations to their typical treatment pattern to keep your loved one in one exam room. Good luck to you.

Rescue mom

My local Alzheimer’s Association has lists of all kinds of doctors and specialists who deal with dementia patients. Many of the eye specialists  also handle very small children (I guess there are many similarities). Anyway, even my small town has several that at least allow the caregiver in the room at the same time. 

Sheesh. Seems like they would find out real fast how that can go otherwise. Several people here have talked about how doctors tried to take the PWD alone, and ended up coming to get the caregiver and admitting they were wrong.

NuttyProfessor

Thanks all - I decided to pass on the ophtho visit.  That was a good comment about "so what if they find something, what are you going to do about it?"  Daily eye drops, at minimum....not a chance that will happen.

A few days of eyelid wipes 2x/day, and my mom says her vision is better.   I'll run a vision test next weekend, and hopefully there will be no need for a vision test.  The "spa day" eye compress sounds great - for me.  My mom would have no patience for that.  She doesn't sit still for long except when she's eating or watching TV.  But, maybe eventually the aide can use a washcloth and a touch of baby shampoo instead of my having to buy the eyelid wipes.

I'm sure I could have sweet talked my way inside the office once I got there, but the principle of the thing is what made me say thanks but no thanks.  If they are willing to compromise their care of dementia patients for the sake of this policy of theirs, I would assume they wouldn't take the time to provide good care, either.  And making an 86 year old with mobility limitations wait outside??  Please, that's even worse.

mommyandme (m&m)

My mom started saying she was having trouble seeing a time ago.  We found out that applying mascara to a clump of very white eyelashes did the trick.  She thought the white place was foggy or something.  Just had to share.