Missing from dementia treatment and care
I am not a spouse or partner of a LO with dementia, just a daughter trying to help in any way I can.
I have read and read the posts here and it occurs to me that what we are missing from the medical profession is the "team" approach for this disease. A group of like minded professionals who not only treat the patient but also treat the caregiver.
To be able to have a neurologist, primary care, counselor, etc. on the same team would be a boon to the caregivers...no searching out someone to advise or teat as things change or progress, not having to repeat or try to get info shared between multiple professionals, the team working for the patient but also the caregiver to maximize the care of both.
My father has dementia...while I have not heard a stage from the neuro (via mother few details as only one person to accompany patient) from what I have seen of his behavior and read I believe it to be mid to late 5. Both are in their 90's.
Trying to counsel my mother about how to proceed has been met with reluctance on her part...she sees it as her job. If there were a team involved, they could coach each other on the needs of both and then "doctor" would be the one assisting with how to go forward and when.
Just my thought given our situation.
Comments
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I guess in a different world.
Right now, a first neurologist appointment can take 6-8 months in many places.
Being a physician of any kind isn’t as financially or emotionally rewarding anymore, mostly because of giant health systems many physicians must join to survive and the insurance companies’ ever decreasing reimbursement for visits.
In my area, many primary care providers are retiring early and some are just leaving medicine entirely. Do you hear kids saying they want to grow up to be a doctor anymore? Nope.
The idea of “team” care is unrealistic. Insurance doesn’t pay physicians to work as a team. They pay for doctors to see patients one after another all day.
Your parents are in their 90s. What are you wanting your mother to do? It’s incurable. If he’s very lucky, something else will take him before dementia is done.
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I think our doctors do a better job of communicating now than at any time in the past. We use a network of doctors, and they can all see notes/tests/diagnosis that other doctors have made on the computer in an instant. Of course, I need to manage which doctor I trust to make the decisions. DH's neurologist and PCP have slightly different approaches.
I wish that there was a social worker attached to each doctor's office that was available right after a diagnosis for the caregiver to help us make sure we know what resources are available.
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dayn2nite2 wrote:Being a physician of any kind isn’t as financially or emotionally rewarding anymore, mostly because of giant health systems many physicians must join to survive and the insurance companies’ ever decreasing reimbursement for visits.
In my area, many primary care providers are retiring early and some are just leaving medicine entirely. Do you hear kids saying they want to grow up to be a doctor anymore? Nope.
You got that right...my primary care doctor said that she is overwhelmed because of the vast number of doctors in our area leaving the profession and/or retiring early.
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Sadly, disconnected medicine with separate specialties that look at patients as body parts unrelated to other parts is the «norm.» I just went through a health crisis with my 99 year old mother. The nephrologist never spoke to the cardiologist who never spoke to the gerontologist. I played a translator of sorts, communicating and co-ordinating information and appointments from hundreds of miles away. My brother did the driving and leg work because I couldn’t leave my husband, who is deteriorating quickly now due to Alzheimer’s.
Mom is doing better now but my husband’s neurologist, whom we waited to see for over 6 months for the first appointment, has decided to become a hospitalist. We got a recommendation for a replacement in the practice. I made an appointment but questioned the date, July 5. I specifically asked if the office would be open on a Monday holiday. I was told it would be open. On July 2, I got a call saying the office would be closed July 5. The first opening is now late August. My husband really needs to see the doctor but none of these health «care» people seem to truly understand what we caregivers really go through each day. If they care, most don’t show it.
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So it took a bit but I now have most of DH's doctors on the same network and we both have the same doctors so we can schedule our appointments together. Only our neurologist is non tech0
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I’ve long thought and said—at the risk of sounding self-centered and selfish—the caregiver needs as much expert/professional help as the person with dementia. Helping the caregiver deal with the disease also helps the PWD. But as said, there’s not much out there. I guess we don’t fit in any of those “categories” and codes doctors have to use now to get paid. Which is kind of beside the point of whether such help even exists….0
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Talk therapy with a clinical psychologist helped me a lot. She wasn't part of my wife's care "team" and that is appropriate. I needed to be able to speak freely without my thoughts about her becoming part of her medical record.0
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Stuck in the middle wrote:Talk therapy with a clinical psychologist helped me a lot. She wasn't part of my wife's care "team" and that is appropriate. I needed to be able to speak freely without my thoughts about her becoming part of her medical record.
Stuck, I could not agree more!
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loveskitties-
I have heard of people who have transferred their elderly parents' care to a geriatric specialist rather than seeing a neurologist and PCP. If you can find one, perhaps that's an option although if they have a relationship with their PCP that might not be ideal.
Otherwise, deliver me from this model of care. When I moved my parents closer to me I got them into the largest and most well regarded health system in my area so they shared a PCP, a pulmonologist, retinal specialist and cardiologist. Every single one of those doctors puts dad's needs and wants ahead of what was best for my mother. Many times I had to remind a physician that while I accepted that I was going to lose my dad to dementia, I was not going to lose my mother as collateral damage.
I agree with Stuck and Joe- getting my mom her own individual psychiatrist and talk therapist was the single best move I made around her care. It was great to have someone- other than me- who always had her back first and what was best for her foremost.
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harshedbuzz, wow you said it all so very well. Thanks! I've been following this post and could relate.
My husband's neurologist wanted me to run him all over for brain scans, heart scans, etc. after I related to the doctor about the last TIA I observed DH having. One of many over the years. I ended up cancelling all of the brain scan, heart scan, etc., appointments. I believe there were four. I remember thinking when the appointments were made, what are we saving him for....a few years in a memory care facility? He would hate being in one and that would probably do him in.
One question the neurologist asked was, if my husband had a full blown stroke what would I do? I said if he didn't recover within a few minutes like he has done with the TIAs, I would call 911. Of course I would not let him lie there and not get medical help.
Our former retired PCP said that calling 911 for TIAs would fast forward the Alzheimer's because of the hospital stays. We discussed what I did when a TIA happened and that was to observe DH and when he recovered within a minute or two, go on with our day. DH has had perhaps a dozen TIAs that I witnessed over the years. Our PCP was in agreement with what I had been doing.
I'll maybe get some angry comments about this, but if that happens, I will just leave like I did when I first joined this site and made a comment about seeing an attorney for Medical and Durable power of attorney. My husband had not been diagnosed with Alzheimer's and was still in the know about what he was doing, so I did not share with the senior attorney that DH was having memory problems. I'd been married to the man for almost 50 years, but accused of being totally wrong with "hiding the memory issues from the attorney," on here. I was so shocked and embarrassed at the attack, I deleted the posts left for a few years.
Since my return, I feel like people are more understanding, which is good. We all need that.
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No judgment from me, Nancy.
One of my friends has had a couple of strokes. She told her husband to call 911 if she has the next one in front of him, because a stroke can be treated when it first happens. However, if he comes home and finds her on the floor, he is to go to the lake for a couple of days. She does not want to be helpless in a NH.
Not telling you or anyone else what to do, just sharing.
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Thank you dayn2nite2 for your comments.
I was not advocating for the team to be in a single organization, only that they have a network much like they do for cancer patients...oncologist, radiologist, labs, etc.
You ask what am I wanting my mother to do. Legally she is in control even though there is a medical poa...she is first. I want her get help with his care and not take it all on her shoulders...she resists help from the family except on the smallest things as she sees it as her responsibility.
Both parents are in remarkable physical health for their age, except for eyesight...both have MacDeg in one eye.
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There is such a place in Austin Texas its called the Comprehensive Memory Center.
When DH was diagnosed, we were both connected with social workers. DH declined working with his social worker after one or two visits. I had regularly scheduled appointments with my social worker. My social worker connected me to resources and taught me what to expect on the dementia journey and ways to manage the stress involved in caregiving.
The neurologist, geriatric psychiatrist, social workers and counselors were all at one facility
https://dellmed.utexas.edu/units/mulva-clinic-for-the-neurosciences/caring-for-patients-and-families
DH and I were both patients when we were in Austin. Over a year ago, DH and I relocated to a rural community to be closer to my family. We remain connected to the Geri-Psych and Social Worker at the Comprehensive Memory Center within Mulva Clinic via telehealth.
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loveskitties wrote:
Thank you dayn2nite2 for your comments.
I was not advocating for the team to be in a single organization, only that they have a network much like they do for cancer patients...oncologist, radiologist, labs, etc.
You ask what am I wanting my mother to do. Legally she is in control even though there is a medical poa...she is first. I want her get help with his care and not take it all on her shoulders...she resists help from the family except on the smallest things as she sees it as her responsibility.
Both parents are in remarkable physical health for their age, except for eyesight...both have MacDeg in one eye.
I didn't say I thought you were advocating that everyone be from one organization. I'm saying there is no money in that approach and also there is no point in involving multiple people in care for dementia.
Frankly, out of every possible doctor that could be seen, I feel the neurologist is the most useless. There is nothing they can do but order tests, come back in 6 months.
The majority of people need 2 doctors. A primary care specializing in geriatrics and possibly a geriatric psychiatrist. Period. If you have dementia and you get cancer, don't treat. If you have any other disease, you treat only for comfort. Then you pray they have a heart attack or stroke that ends life prior to the end stage of dementia.
Your parents are in their 90s. Let them live as they wish and if your mother feels it's her responsibility, then let her take on the burden. If she becomes ill or passes away, then you can do things as you wish. Neither parent will live forever, even if both are physically healthy now. It's not a battle I would fight with a 90+ year-old mother.
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I have had therapists and now a psychiatrist who have mostly all been great, invaluable for me in general. But they don’t know anything about dementia and dealing with the PWDs problems. I realize it’s a fine line, but I wish for more specific dementia advice, maybe like what LadyTexas mentioned. We have a memory clinic with all the docs, neurologists etc etc. DH went to and still does once a year, but it’s not much for him beyond the Dx and Rx renewal, and nothing for me as caregiver.0
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I completely understand your mother's point of view. We want to feel capable and independent.
What she likely does not understand is your desire to be a part of their lives....it is not simply that you want to make things easier...you want to be included. Being included...I bet she would accept.
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loveskitties-
To answer your initial question, the Memory Center which diagnosed dad did take a broader approach facilitating imaging and bloodwork for families, having in-house psychologists to do evaluations as part of a regular appointment and social workers to help navigate family disagreements and offer resources for caregiver support. TBH, they were great for getting the diagnosis narrowed down but too far to travel to for "Memory Cafe" or other support activities.
In your shoes, I agree with jfkoc that approach probably matters more than you know.
My mother saw herself as the self-appointed expert on dad. Granted she'd been married to him 60 years- to the day- when he was initially diagnosed, but she wore rose-tinted lenses that precluded her seeing things as they were.
FTR, she fought me for almost 10 years around my concerns that dad needed to be evaluated. I went ahead anyway and made my Plan B deciding who I'd pick for his neurologist, SNF, started talking to people about attorneys and MCFs and reading about best practices for care in the home. She took a while to wrap her head around certain care strategies like living in his reality (she thought she could prompt him back into rational thought), fiblets (she thought he was too "with it" for lies and claimed she'd never lied to him before- I've seen her sneak bags in from Talbots and claim she'd had that sweater for years, so not buying it) and distracting. I'd printed her out articles discussing validation and fiblets and she'd ignore them and tell dad "you can't drive because you have dementia and it's only going to get worse". Then I'd get the call that he was acting out in an aggressive manner and drive to their house to calm things down.
What helped, was getting her into a support group where other people her age gave her the exact same advice I did only she listened when they did. Maybe instead of telling her what to do, you could find a peer support group to do it for you. I also found it useful to ask after details "in the event you need to step away for a time"- something that came to pass when she had her knee replacement done.0 -
When my DH had his appointment for his cognitive testing and diagnosis, I was encouraged to talk with a social worker while he was doing his testing. At the time I was thrilled that I had someone to talk to about what I was going through and hoped it was a sign of a good relationship being developed for my DH's care all around. My first surprise was when I brought up anosognosia and she had never heard of it. Then, the next day I went online and read the notes she had written up about what I had discussed with her, and there were so many errors in the information I gave her.
The next time my DH had an appointment, they once again asked me if I wanted to spend some time talking with the social worker. I declined.
I am now working on finding a psychologist that can better help me deal with my stress of being a caregiver.
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At the risk of stating the obvious, I think the reason dementia care is so dissatisfying for all involved is that our understanding of the disease is still so primitive. So called "treatment" for dementia now is nothing more than palliative. This is what treating diabetes was like before insulin, or treating infections before germ theory. There are just not many examples of it in Western society in the 21st century. Though our treatment of other brain illnesses comes close. Maybe its just me, but I find it somewhat helpful and comforting to remember that we're not the first caregivers to face incurable diseases.
Not trying to lecture, its just my own thought process. And neurologists are an interesting bunch. in the days before brain imaging, they used to be absolutely the best docs ever at making a diagnosis based on physical exam, you really had to know your neuroanatomy to do that. And most are very research oriented (because there's so much still to learn). But being a neurologist now is kind of like being an oncologist in the 1950s or 60s-drugs are still pretty primitive, and most of your patients are not going to get better.
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dayn2nite2 wrote:
Frankly, out of every possible doctor that could be seen, I feel the neurologist is the most useless. There is nothing they can do but order tests, come back in 6 months.
The majority of people need 2 doctors. A primary care specializing in geriatrics and possibly a geriatric psychiatrist. Period. If you have dementia and you get cancer, don't treat. If you have any other disease, you treat only for comfort. Then you pray they have a heart attack or stroke that ends life prior to the end stage of dementia.This is pretty much it. Except the neurologist is for diagnosis, then to refer back to the referring doctor or PCP. I would also suggest a referral to all sources of education. This is where a KNOWLEDGEABLE social worker would be utilized. Referrals should be made to the local Alzheimer's Association chapter or alternate group, to a support group, to basic educational reading and video material, and most of all, to this message board. Plus the social worker should advise to avoid stress and confusion as much as possible, such as having company over and going out to restaurants. The social worker should teach about anosognosia, confabulation and validation therapy. There is lots to be done.
On a personal note, I tried to interest a college graduate with a double major in psychology and sociology to look into geriatrics as a career. I thought she would be a great geriatric care manager and do what I suggested above. But she wasn't interested. I was disappointed. But it's her life, not mine.Iris0 -
dayn2nite2 wrote:Frankly, out of every possible doctor that could be seen, I feel the neurologist is the most useless. There is nothing they can do but order tests, come back in 6 months.
The majority of people need 2 doctors. A primary care specializing in geriatrics and possibly a geriatric psychiatrist. Period. If you have dementia and you get cancer, don't treat. If you have any other disease, you treat only for comfort. Then you pray they have a heart attack or stroke that ends life prior to the end stage of dementia.
Iris wrote: This is pretty much it. Except the neurologist is for diagnosis, then to refer back to the referring doctor or PCP. I would also suggest a referral to all sources of education. This is where a KNOWLEDGEABLE social worker would be utilized. Referrals should be made to the local Alzheimer's Association chapter or alternate group, to a support group, to basic educational reading and video material, and most of all, to this message board. Plus the social worker should advise to avoid stress and confusion as much as possible, such as having company over and going out to restaurants. The social worker should teach about anosognosia, confabulation and validation therapy. There is lots to be done.--------Lady Texan response:In our experience, the KNOWLEDGEABLE social worker was invaluable. He was very experienced. He had previously worked in hospice. He connected me to local resources, including support groups for me and day programs for my husband. He helped me carefully assess early retirement. Because of his guidance and support. I was better prepared for what was coming down the road.The geriatric psychiatrist earned my husband's trust. She diligently worked to manage his anxiety and find the best med mix for DH. She is especially skilled in getting DH to tell her what he is struggling with.The neurologist is highly regarded in his field. He provided the diagnosis based on the so many tests: lab tests, neuro-psych tests, MRIs and a PET scan. The diagnosis was February 2019. We have not seen the neurologist since.Our local PCP manages DHs refills and is very knowledgeable about dementia related illnesses. He is on the "front line". We see him regularly. Although the PCP is in a different health care system, he can coordinate with the geriatric-psychiatrist & vice-versa.I will add that I am far from bashful when reaching out to the health care team through the patient portal.0 -
Those of you that have read my posts, know I have my hands full. DH has been verbally aggressive, pouty, mean spirited, suicidal and dangerous. He has had two inpatient psych hospital stays in two years. I have had the police to our home (and preciously to our apartment) more than once.
Even with a health care team that I consider exceptional, we struggles with all of those difficult to deal with behaviors. I cannot imagine this journey without my healthcare team.
on a separate note - how do you use the "quote" function? Do you copy and paste the prior posters text after hitting quote?
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Dear loveskitties
first you sound like a wonderful person and a wonderful daughter
My wife was a physician computer expert now stage 7 Alzheimers.
She was an expert in using medical information systems in the team approach.
Teams and cancer centers originated in the cancer area because Surgeons and radiation oncologists and chemotherapists would not talk to one another. They lived in different medical worlds. Cancer is treatable in many cases with a variety of therapies working together. But compared to dementia it is TINKERTOY medicine.
We don't know who has Alzheimer's until it is advanced, we don't know what causes it, we cant slow it , we don't even have good prognosis. Most of the care is not to treat the disease is essentially custodial care for the patient and supportive care for the caretaker
NO ONE WANTS TO PAY FOR SUCH CAREOur health insurance model is designed for cancer not dementia
These are core problem known to all of us. But hang in there
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LadyTexan wrote:
on a separate note - how do you use the "quote" function? Do you copy and paste the prior posters text after hitting quote?
When you hit quote it opens the text window at the top. It will have the entire post you are quoting You can delete whatever you are not responding to. The quoted material appears in a box with your text below it.
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Crushed wrote:LadyTexan wrote:
on a separate note - how do you use the "quote" function? Do you copy and paste the prior posters text after hitting quote?
When you hit quote it opens the text window at the top. It will have the entire post you are quoting You can delete whatever you are not responding to. The quoted material appears in a box with your text below it.
this is a quote of a quote . DW always said she could not find my Professor "off switch" have a nice day
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When you hit quote it opens the text window at the top. It will have the entire post you are quoting You can delete whatever you are not responding to. The quoted material appears in a box with your text below it.
Thanks. Crushed.
elained
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Crushed wrote:Crushed wrote:LadyTexan wrote:
on a separate note - how do you use the "quote" function? Do you copy and paste the prior posters text after hitting quote?
When you hit quote it opens the text window at the top. It will have the entire post you are quoting You can delete whatever you are not responding to. The quoted material appears in a box with your text below it.
this is a quote of a quote . DW always said she could not find my Professor "off switch" have a nice day
Thank you! Have a nice day!
ps - I used the Quote feature after several years on the forum.....YAY ME!
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Loveskitties wrote:
Trying to counsel my mother about how to proceed has been met with reluctance on her part...she sees it as her job.
Jfkoc wrote:
I completely understand your mother's point of view. We want to feel capable and independent.
What she likely does not understand is your desire to be a part of their lives....it is not simply that you want to make things easier...you want to be included. Being included...I bet she would accept.
LadyTexan responded:
@loveskitties, I understand where your mother is coming from. As Crushed stated, you sound like a wonderful person and a wonderful daughter. I think jfkoc is spot on.
One thing I encountered on the caregiving journey is well meaning family and friends who offer suggestions on how to better care for my DH. They are speaking from a place of love for both DH and me. I know it sounds backwards, but my immediate feeling is often defensive, even when the suggestions are valid and useful. I felt that my decisions & abilities were being questioned.
My defensive feeling was likely based on my belief that I am caring for my husband to the best of my ability. I have read everything I can get my hands on about dementia related diseases and caregiving. I am in the trenches every day doing this. I am following the guidance of the healthcare professionals. My defensive reaction is also likely fueled by receiving lots of unsolicited advice from friends, colleagues and acquaintances on research, alternative treatments and how to put my oxygen mask on first. I was overwhelmed and ultra sensitive to offers for help, even from my loved ones.
I don’t think my defensive reaction was justified, but my feelings were certainly real at the time. I am now more open to receiving help from my loved ones. Earlier in the journey, I was shutting them down.
This is just my perspective on my experience.
You are obviously a loving daughter. She is very blessed by you.
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CStrope wrote:
When my DH had his appointment for his cognitive testing and diagnosis, I was encouraged to talk with a social worker while he was doing his testing. At the time I was thrilled that I had someone to talk to about what I was going through and hoped it was a sign of a good relationship being developed for my DH's care all around. My first surprise was when I brought up anosognosia and she had never heard of it. Then, the next day I went online and read the notes she had written up about what I had discussed with her, and there were so many errors in the information I gave her.
I wonder if you were turfed to a social work graduate student who was doing her clinical rotation. Often big teaching hospitals have a number of grad students assigned to various clinics. Friends of mine have worked with the liver transplant team, the HIV/Aids clinic and the MS group. The MS intern wanted to train in oncology as she was a cancer survivor, but they weren't as open to students as the other areas in the system.I am now working on finding a psychologist that can better help me deal with my stress of being a caregiver.
Good luck with this. My mom's psychiatrist and talk therapist were a safe space and benefit to her. I hope you find a good fit first time out.
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My HWD’s neurologist referred us to a palliative care team. They include a gerontologist, nurses, pharmacist, social worker, and spiritual counselor. They referred him for home health care. His GP still approves everything, but I feel comfortable going to the palliative care group with questions or to coordinate care.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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