Ethical Care for People with Alzheimer’s Disease

Ethical Care for People with Alzheimer’s Disease-Part XI

(11/18/20)- It is estimated that 5.8 million Americans have been diagnosed with Alzheimer’s disease. With the pandemic soaring all over the nation, many medical experts fear that there will be long term Alzheimer’s problems with the many who have come down and “recovered” from the virus.

Added to the fact that the nation is aging, and so far, there has been no effective medication to even halt the progress of the disease for more than a very short period of time, the problem will only worsen. Nursing home staffing problems are already a major issue that will only worsen with time.

(2/20/18)- Alzheimer patients who have dental problems, and their loved ones caring for them, have dental difficulties, just as the rest of the population having to deal with this issue. We at therubins received the following email from Karen Lee back in December, and we do apologize to her for our long delay in posting it. We thank Karen and recommend the site that she refers to in her email:

From: Karen Lee
Sent: Wednesday, December 27, 2017 1:08 PM
To: Harold Rubin
Subject: Re: Alzheimer's link not working

Hi Harold,
I appreciate you're busy but I just wanted to follow up on the email I sent you the other day; a copy is included below for reference
On Wed, Dec 20, 2017 at 1:43 PM, Karen Lee <karen@edusamail.com> wrote:

Hi Harold,
I came across a broken link on your site so I thought I’d send you a quick email about it
I was on this page - http://www.therubins.com/aging/alzheim5.htm, when I noticed the link to http://www.alzheimers.org/trials/index.html wasn’t working.
This initiative seems to have moved to https://www.alz.org/ so it might be worth updating your site.
Also, we have a page with resources to help those caring for Alzheimer's sufferers.
https://www.emergencydentistsusa.com/alzheimers-dental-care/
It offers Alzheimer's-specific oral health advice. It was compiled from an interview we conducted with Dr. Sedillo, a member of the Special Care Dentistry Association and an expert in this area.
It’s an often overlooked aspect of care that is important and I think visitors to your site will find this valuable.
Do you think you could please add a link to us alongside the updated Alz.org link?
I hope that helps.
Thank you,
-Karen

(5/24/17)- A report from Stanford University’s Clinical Excellence Research Center estimated that by 2030, one in five Americans will be 65 or older, and the number of older Americans living with dementia is expected to increase to 6.5 million, up from 5.5 million now.

Ruth Dew, director of family and information services at the Alzheimer’s Association estimated that two-thirds of the people with Alzheimer’s are women, while two-thirds of the caregivers are women also.

(7/15/16)- We received the following e-mail from Evelyn Rodgers of openmedialibrary, and we at therubins wanted to share it with our viewers:

“From: Evelyn Rodgers <e.rodgers@openmedialibrary.org>
To: hrubin12@nyc.rr.com
Cc:
Date: Tue, 12 Jul 2016 13:51:18 -0500 (CDT)
Subject: Harold and Allan Rubin - Alzheimer's Disease question
Hi Harold and Allan,

Just wanted to send you a comment on your Alzheimer's page: http://therubins.com/alzheim/alzethic.htm

Thanks for putting it together! My name is Evelyn Rodgers and I'm a media specialist at my local library. With the summer upon us, I've been handed the task to update all of our library guides before the start of the new school year. I've been working on our Senior Health guides, and wanted to include information on Alzheimer's disease. I have some student volunteers helping (they're getting credit in their classes next year!) and they have given me this page to review and include: https://www.wristbandexpress.com/content/all-about-alzheimer-s-and-awareness-through-wristb

It's a great overview; I ended up including it so I could show them their efforts haven't gone unnoticed. Do you think you could include a link to it on your page too? I'd love to show their teacher they went above and beyond this summer.

Thanks!
E.Rodgers@openmedialibrary.org “

(3/3/16)- The former New York City chapter of the Alzheimer’s Association, which we noted in out item dated 12/1/15 below, has taken the name CaringKind.

Lou-Ellen Barkin, president of CaringKind said the new name reflects the organization’s focus on serving families, friends and loved ones of people afflicted with the disease.

The national Alzheimer’s Association has opened a new physical office in New York. The former New York City chapter of the Alzheimer’s Association was one of six local chapters that broke from the national organization.

Chapters contribute 40 cents of every $1 in unrestricted donations to the national organization. We now understand that there are about 80 local chapters of the national organization.

(12/25/15)- The Greater New Jersey chapter of the Alzheimer’s Association and two California chapters have broken from the parent organization, just as we noted the New York chapter has done, in our item dated 12/1/15 below.

Earlier this month, the Orange County< California and San Diego, California also had broken away from the national organization.

Chapters contribute 40 cents of every $1 in unrestricted donations to the national organization. There are about 50 remaining independent chapters that have until January 15 to decide whether to join the national organization, or remain independent.

(12/1/15)- The New York City chapter of the Alzheimer’s Association formally rejected a plan that would have consolidated the local office into one nationwide, single legal entity. Stewart Putnam, chairman of the national Board of Directors for the Alzheimer’s Association, said he was disappointed with the New York City chapter’s decision, but hoped that the 53 other independent chapters nationwide will remain affiliated.

The New York City chapter asserted that it contributes 40 cents of every dollar of unrestricted donations to the national office, but is not getting an equal amount in return.

(6/23/15)- Below you will find a message from the National Institute of Aging that may prove helpful to some of our readers who are caretakers of individual's with Alzheimer's disease.

When you are caring for a person with Alzheimer’s disease, it’s important to make your own health a priority. Staying physically, mentally, and emotionally healthy will make you a better caregiver. Here are 3 tips on how to care for yourself while caring for others:

Ask for help. Being able to take regular breaks from caregiving will help reduce stress and burnout.
Get regular exercise. Find activities you enjoy and you’ll be more likely to stick with them. You don’t have to do it alone—partner up with your loved one for short walks or dancing.
Eat healthy foods. Make sure to choose a variety of fruits, vegetables, whole grains, and lean protein.
Read the full tip sheet Alzheimer’s Caregiving Tips: Caring for Yourself on the ADEAR website and visit our dedicated Alzheimer’s caregiving page for more resources.

Share these tips on social media with this message:

#Caregivers—take care of yourself so you can take care of others. Get tips on making your #health a priority. http://1.usa.gov/1HWMr7n
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National Institute on Aging

(3/26/15)- About 5.3 million Americans have Alzheimer’s disease, yet a recent study done by the Alzheimer’s Association revealed that more than half of them were never told that they suffered from the disease. It is the 6^th leading cause of death in this country.

The study compared responses from thousands of Medicare beneficiaries to annual surveys with Medicare claims for their care. Only 45% of the beneficiaries reported that their doctor told them that they had AD. 72% of those diagnosed with Parkinson’s disease, and over 90% of those diagnosed with cancer reported that their physicians had revealed the illness to them

(10/16/12)- We at therubins received this email from Marylyn, visited the site she and the intern referred to and found it to be a very helpful and informative. We, the editors of this site are more than willing to help anyone with helpful information in the battle against Alzheimer's Disease and will do all we possibly can to support this effort. Thank you Marylyn and the intern she refers to in the email.

Attached email message ---
From: marylyn@valleybookclub.com
Subject: Quick Question for the Ethical Care for people with Alzheimers Disease
To: hrubin12@nyc.rr.com
Date: Mon, 15 Oct 2012 12:11:44 -0400

Good morning,
My name is Marylyn and I'm a volunteer librarian. I hope it's okay I'm reaching out to you via email. The reason I'm writing today is because I've been working on creating a section for seniors on our new library website (soon to be live).
Your page (http://therubins.com/alzheim/alzethic.htm) was one that my student intern found for me to use in the senior health section. I just thought you'd like to hear that :)
She also found this other page that I thought might be a good fit for your website.
Alzheimer's and Dementia Learning Center - (http://www.drugcoupons.com/blog/alzheimers-and-dementia-learning-center.html)
If you like it, would you mind including it? I'd like to show her if you add it. It would be a great motivator since she's an unpaid intern and is doing a great job! Thanks, I really appreciate it. Give me a shout back if you include it.
Have a good one,
Marylyn Brooks

(11/29/10)- Here is another email that we at therubins recently received from Nathan Grimm, Program Manager- SR Education Group in which he refers to an excellent article that was recently published to help gain more knowledge about Alzheimer's Disease and the resources available for family and firends-

Friday, November 19, 2010 2:54 PM

Subject Info for Alzheimer Patients

Dear Harold Rubin, MS, ABD, CRC

I really appreciate your collection of resources on the TheRubins.com website, http://www.therubins.com/aging/resources3.htm . It is great that as a site for senior citizens and those who care about them, you provide information on topics pertinent to the elderly so that readers will be able to make more informed decisions about the problems associated with the elderly.

We just published an article that has all the best information for people who have or know someone with Alzheimer's, http://www.guidetohealthcareschools.com/library/alzheimers-patient

The article would be a valuable addition to your information. I hope it helps everyone who uses your site to research Alzheimer's.

Sincerely,

Nathan Grimm
Program Manager - SR Education Group
Twitter" @n8ngrimm
(425) 605-8898 123
Lake Street South Suite B-1
Kirkland, WA 98033

(11/2/10)- We at therubins recently received the following email from Will, and would like to thank him for taking the time to send the message on to us, and since the site he refers to is really an excellent source for information about Alzheimer's Disease we would like to pass it on to our viewers.

"I've used your site a great deal in helping my wife with Alzheimer's, and I wanted to pass along one other article that's been very useful to me: http://assistedlivingway.com/w/alzheimers-resources

Maybe someone else will find it helpful as well.

Thanks for your time,
Will"

(3/21/2000)- Writing articles for this web site has made us acutely aware of the needs of the elderly in our society. As the baby boomers mature and reach their senior years, the system of health delivery is going to be greatly taxed and will endeavor to come up with "creative " methods to meet the demands. There is no doubt that new technology and medications will aid in enhancing the services given to the elderly. But will the stigma of old age be erased and will the aged bear the scrutiny of budget analysts and related policy makers? With this in mind, we would suggest that our readers make themselves more familiar with ethical principles that do not consign individuals to a "natural" process that is inevitable and unchangeable.

Along these lines, we recommend reading the Benbow and Reynolds article in Hospital Medium, March 2000, 61(3): 174-177 entitled "Challenging the Stigma of Alzheimer’s Disease." This is a philosophical paper stressing a humanistic approach to treatment of Alzheimer’s disease.

In discussing aging, they point up "the stigma of old age is such that memory problems may be assigned to dementia without investigation, as if dementia is a natural component of the aging process." Their core point is that health-care professionals need to tailor their level of care to the individual, not assuming that things are unchangeable. Treating personnel need to "determine changes in function [that] can be identified, rather than inevitable deterioration being assumed, assessment must involve obtaining information about the person’s function before and during their hospital admission." They stress this concept time after time: "If health-care professionals attempt to be sensitive to their own prejudices and those of others, they will be open to other ways of understanding the "problem" of Alzheimer’s disease, which do not seem then as part of an inevitable decline…and not assume that people with a diagnosis of AD lack the capacity to make any decisions.".

They cite, from Post’s book entitled The Moral Challenge of Alzheimer’s Disease (John’s Hopkins University Press), six principles of ethical care of people with Alzheimer’s disease that we think is worth repeating:

Something can be done with people with AD.
Many factors cause excess disability among individuals with AD. Identifying and changing these factors will reduce excess disability and improve the person’s function and quality of life.
People with AD have residual strengths. Building on these strengths will improve the individual's function and quality of life.
People with AD express understandable feelings and needs through their behavior and responding to those feelings and their needs will reduce behavior problems.
Aspects of social and physical environment affect function of people with AD. Appropriate environments will improve an individual’s function and quality of life.
Addressing the needs of individuals with AD and the needs of their families and involving families in the care of individuals with AD, will benefit all concerned.

After Post ((1995)

Finally, Benbow and Reynolds suggest the following "actions points" for treating health-care professionals.

Diagnose and treat medical/surgical conditions
Establish an accurate diagnosis of a dementia
Establish a functional baseline. (They note that in a hospital individuals tend to function below their baselines "because of the different environment and change in their routine.")
Involve the individual and respect their wishes.
Involve the family and respect their wishes
Changing attitudes/challenge negative views.

Many of us may someday be in the position of being diagnosed with a dementia. We would want to be treated with dignity and respect. It is up to us to set an atmosphere that is reasonable and applicable to the needs of those with dementia by making sure ethical principles and action points like those cited above are part of permanent treatment protocols.

References:

Benbow, Susan M. & Reynolds, David. Challenging the stigma of Alzheimer’s disease. Hospital Medium 2000;61(3):174-177

Post SG (1995) The Moral Challenge of Alzheimer’s Disease. The John’s Hopkins University Press: Baltimore and London.

FOR AN INFORMATIVE AND PERSONAL ARTICLE ON PRACTICAL SUGGESTIONS WHEN SELECTING A NURSING HOME SEE OUR ARTICLE "HOW TO SELECT A NURSING HOME"

By Harold Rubin, MS, ABD, CRC, Guest Lecturer
updated November 18, 2020

email: harold.rubin255@gmail.com or allanrubin4@gmail.com

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