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Federal policy change? Required advocacy?
Posted: Thursday, March 28, 2019 2:25 AM
Joined: 2/9/2019
Posts: 114

Here’s my latest thought—just processing out loud and thought I’d run it by the community for your input.

I recently joined AIM, the advocacy arm of  I’ve read a lot of posts about the difficulty of getting the proper care for our LOs, especially when the one who is caring has no legal standing and the one legally responsible is not providing care or may have cognitive impairment him- or herself.  Right now, the only recourse I’ve heard about is either fighting legally for custody (and/or contacting Adult Protective Services) or waiting for a crisis to occur before the one legally responsible will start doing something.  Yikes!  Neither one of these scenarios sits well with many of us.  What about a middle ground?

Here’s my idea:  do we need legislation that protects our LOs beyond the care of family members?  Care that requires state/county or other agencies’ involvement?   (I know I have longed for an authority other than family members). Those living with dementia who have caring family members can be helped.  What about those who are virtually alone in this?  They receive this diagnosis, but what if they have an obstinate partner/spouse or other legal guardian who does not provide the care they need? Or a partner/spouse who also has Alzheimer’s?  What if they both have anosognosia? What if they have no children?  What if they are already living in an abusive situation?  Unfortunately, there are other horrific situations that I can think of.   Some of you may have read the story of the nurse (in Singapore?) who was convicted of hitting an Alzheimer’s patient.  And here in the states, our nursing commissions have entire divisions that do nothing but investigate nursing home abuse cases.

So here is my idea: with every diagnosis of dementia there is an automatic referral to services, then a follow-up at a specific time.  I remember the neurologist asking if we wanted a referral for home health services, only as an afterthought. My stepfather was about to say no.  Because I was there, I said yes. I can just imagine the thousands—maybe millions—of no’s that are given when asked the question, when actually a yes is warranted. Should there be legislation that people are just given referrals automatically?   Much like the flu, shingles and pneumonia shots that are commonplace these days, should a diagnosis of Alzheimer’s, VD, etc. just come with an automatic protocol of referring to specific services with a follow-up plan in place?  With the rise of the aging of us Baby Boomers, I can see that we will soon have a crisis on our hands—if we don’t already.

Thoughts?  Other ideas?  I plan to attend the next Alzheimer’s Conference in DC in 2020, and I would love to bring your ideas forward if given the opportunity.

Thanks so much for reading such a long post!


Posted: Thursday, March 28, 2019 8:10 AM
Joined: 12/4/2011
Posts: 19854

referral to services

specifically what services?

Last Dance
Posted: Thursday, March 28, 2019 9:22 AM
Joined: 5/2/2013
Posts: 421


 On one hand you may be right, but this is a slippery slope, there have been cases on this board about how the government has interfered with some ones care and most of the time it does not turn out for the good. In most cases once you get a bureaucrat involved it does more harm than good to your love one.


Posted: Thursday, March 28, 2019 2:23 PM
Joined: 2/9/2019
Posts: 114

Good point.  This is one pitfall it would be great to have input on.  Ideas?  One case in point comes to mind (completely a different scenario, but it's a good example):

Some years ago, when my brother and his wife were in college and still dating, they were playing basketball together and my brother's elbow accidentally hit my SIL's lip.  Of course, they immediately went to Student Health because my SIL's lip began to swell.  Within half an hour, the healthcare professionals had separated the two of them so that they could get what they considered my SIL's "real" story.  They were suspecting partner abuse!  Although it was frustrating and humiliating to the both of them--things were eventually straightened out--I am glad that there was a mechanism in place to at least investigate the issue.  What if there had been abuse going on?  Wouldn't my SIL have been thankful that FINALLY someone took notice?  Many of us have heard a story of the rescue of a minor in an abusive situation because a teacher, doctor, nurse, etc. finally heard the silent cries.  What if a person with AD was not being taken care of properly and was admitted to the hospital with a UTI, perhaps the third in a two month period?  Should the healthcare professionals be required/strongly encouraged to at least report this? 

Of course, this could turn into a nightmare for the innocent.  There are also stories out there of children who were unjustly removed from homes that were loving because of some professionals' misunderstanding and/or inaccurate reports.

So, solutions?  Ideas?  A private non-profit agency that could provide recommendations?  What do the rest of you think?

Regarding Jfkoc's referral to services: what type of services can you all think of?  CELA?  Home health care, Adult day health?  What are your thoughts on the types of services that have been most helpful to you?

Thanks again for the input!


Iris L.
Posted: Saturday, March 30, 2019 9:02 PM
Joined: 12/15/2011
Posts: 17190

Great thoughts, Acoxe!  I have long believed that the neurologist or PCP should refer the PWD and family to the Alzheimer's Association.  Then they can be introduced by the Care Consultant to all they need , to an elder care attorney, to private or public social services, caregiving classes, support groups and so forth.


If you are in the Los Angeles area, you might want to attend the Early Memory Loss Conference in Torrance.  I posted about it on the message boards.


Iris L .

Posted: Sunday, March 31, 2019 3:05 PM
Joined: 7/13/2017
Posts: 444


Yes! I recognize that you are freewheeling some thoughts that are not fully developed but I wholly endorse the concept of some sort of mandated referral to further support/assistance upon initial diagnosis. Far too many people get a diagnosis and an appointment for a followup in six months, and that’s it.

The medical community needs to do a much better job with the situation as it now is, but unless there is a cure, it is going to get a lot worse fast: roughly every minute, another American develops Alzheimer’s. The number of Americans living with Alzheimer’s today is already about equal to the combined populations of Alaska, Wyoming, Montana, North Dakota, South Dakota, Vermont and Maine, 5.8 million innocent souls. (That would be equivalent to 23 electoral votes for you political wonks.) Ten years from now, add the equivalent of the population of Nebraska.     



Jo C.
Posted: Sunday, March 31, 2019 7:32 PM
Joined: 12/9/2011
Posts: 11809

Two bits of information:

One: AARP along with some states, California being one, are pushing for tax relief for caaregivers that they feel would help people keep their LOs in  their own homes and also save money for the state in keeping persons out of NHs.   BUT:  Reality rears it's ugly head.

What they plan is for Caregivers to get up to a $5,000 tax deduction each year for care needs.  One would be able to deduct 50% of care aides, or 50% of medical equipment such as wheelchairs or walkers, etc.  The 50% of these costs can then be deducted up to the total of $5,000.

Reality indicates that one would actually need to have the money up front to pay for aides and equipment; many folks do not have that.  It is UP FRONT costs and lack of assets that are the big problems.   And . . . . as the well spouse cares for the ill spouse for years, if they had savings, they would be depleted; SO the well spouse in their old age would not have assets for their own care.

Despite all the touting, it really doesn't  do much at all.  A bit of a twinkle for some folks, but not for all and not where the biggest problems lie. And the COST of aide care is horrendous and getting worse.


Second bit of input:  My two elderly LOs lived in an area where a federal demonstration project was going on and it went on for years and was SO good.  It was put into place during the Clinton administration.  The goal of the project was to keep the person in their own home rather than needing admission to a NH and to meet needs including safety and lowering rhe risk for need of hospital admissions secondary to unmet needs.   This was not only good for the client, but also saved a large amount of money on both federal and state levels.

What it was composed of; each elderly person was provided with a dedicated Social Worker.  That person went directly to the patient's home and took a very detailed history and assessment of needs. That assessment covered physical, psychological with screening for depression, financial issues, nutrition, social issues and much more.  The Social Worker returned a minimum of once a month to see the clients for followup for reassessement for evolving needs. 

The SW was also available by cell phone if problems arose.  Aides could be placed in the house so many hours per month in whatever schedule best suited the client at no cost.  Meals on Wheels were provided; chore workers to do housework and errands were provided, incontinence supplies were provided at no cost; respite care was a benefit.  The SW also had interactions with physicians and so much more including having PT and OT involved.  

If an ER visit or hospitalization was necessary, the SW visited the house the day after the patient returned home to ensure all was well; and the family or client was followed if the client was in rehab, etc.  What was found was that ER visits and hospitalizations were significantly decreased and clients were much happier and healthier overall. It was also shown that need for admissions to NHs was also way down.

It was an awesome program; but when the next President came into office, the project was dumped. 

And so it goes.


Posted: Sunday, March 31, 2019 10:56 PM
Joined: 2/9/2019
Posts: 114

So many good ideas!

Thank you so much for the chime in, folks.  Since my mom was diagnosed and we’ve encountered so many rules and policies ad nauseam that make getting adequate care a hassle or even a roadblock, I have become passionate about the need for change in lots of areas—healthcare, legal system, ALs, MCs, etc.  As we Baby Boomers get older, it’s just going to get worse.  Those stats are sobering, MrToad, and they should give our lawmakers a real moment of pause.    I don’t think I’m being Henny Penny here; the sky really is falling. We are in a worldwide crisis.

You’ve given me so much to think about.  I’ll try to attend the Torrance conference, Iris.   I would LOVE to know more about that program, JoC; sounds like something we could ALL use—let’s bring it back!   More ideas or info out there?   This is good stuff to chew on and try to take action on.

Thanks great bunches!

Iris L.
Posted: Sunday, April 7, 2019 1:37 AM
Joined: 12/15/2011
Posts: 17190

Acoxe, were you able to attend the Early Memory Loss Forum?  A woman did acknowledge that she was from Alzconnected. Was that you?  If so, I'm sorry we didn't get a chance to meet.  


Posted: Sunday, April 7, 2019 12:53 PM
Joined: 2/9/2019
Posts: 114

Bummer!  I wasn’t able to go this time, Iris.  I had to fulfill prior obligations.  But it sure does sound like it was fabulous!  Lots of good information!   I’m going to watch for the next one to make sure I can go.  

Thanks so much for following up and keeping this passion going! I do hope to meet you in person one day!