Jul 7, 2011

Discussion of the use of Terms Relating to Dementia, by Professionals on Linked In

When I tried to tell them that I knew she was still there and still had emotions and feelings and the need to be validated as a whole person ... I was told I was in denial and that what I saw in her eyes beyond the disability was just my wish for a connection.

By Carole B. Larkin
Alzheimer's Reading Room

I wanted to share with you all a current discussion going on in “Linked In” among the Group “Alzheimer’s and Dementia Specialists”, it relates directly to Mike Donohoe’s article, I Am Sick and Tired of Being an Oversight in Alzheimer’s World

My point here is, Mike, take heart, as you can see there most certainly are professionals who “get it” and are working on breaking the old mantras and thought processes about these diseases.

There is a long way to go to break the hold of negativity, but as you can see below, a start has been made, even in the professionals group. These are caring and dedicated professionals who will do what they can to help effectuate change.

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Alzheimer's & Dementia Professionals

Dementia - term of convenience?

Chris Moore I have found that, all too often, someone with dementia is lobbed into a giant pot with the words 'brainless and unhelpable' written on the side. I can understand this from a taxi driver for example, who may have no training or experience of dementia, but from doctors or nurses it still surprises me.

Because someone has dementia you cannot just write them off or attribute anything they say, feel or do to this disease. Different forms of dementia have different symptoms and effects and since every person and their life story is different, only someone with a close relationship with the person has any real idea about what is going on. Yet the world judges.

Do others have this experience? Do you find that the term 'dementia' becomes just a convenient umbrella under which others project their own stereotyped understanding?

Karen Sinclair
I’m truly amazed and extremely encouraged to see this discussion about perspective and perception of the disease. I am also frustrated by the perspectives even in the scientific research.

Although much of the research may be on the right track, we won’t make real progress if perspectives keep hampering understanding. As a caregiver and analyst, I am hoping to present fresh perspectives at the AAICAD conference later this month. Hoping, because interestingly, they accepted my research for presentation poster, but have not provided the funding for me to go.

Scientific researchers need to include perspectives gained by people close to those with the disease.

@ Laura B. and @Ray Aston, you’re right on track with “types of dementia”.

@Judy Berry, your question about what we can do: maybe we can influence the scientific researchers and nudge them in the right directions. I’m hoping that we can be heard at AAICAD. Let’s see.

Judy Berry
Karen, Please keep me in the loop and let me know how your presentation is received at AAICAD. I will be presenting at GSA in Boston this NOV and will be having the Changing the Paradigm piece as part of it. I have presented recently at the MN division of National Hospice Assn and had a little push back from some Dr.s in the audience but I did tell them if they wanted to come to the Ranch, I could prove to them that our later stage residents ARE in fact still in there!

If you would be willing to share your presentation after you do it, I would appreciate learning from you also. I am not a researcher but work closely with the Gerontology Dept at St. Cloud State University to get things out there. We have presented the results of our research each year at GSA since 2007. Our papers are on the Dementia Care Foundation's website if you are interested. www.dementiacarefoundation.org

Karen Sinclair Judy: I just visited the DementiaCare Foundation website and see that you won the 2010 community health leaders’ award. Congratulations! That is awesome!

Chris Moore
Judy, that is fantastic news. Congratulations!

Carole Larkin
Let's have that discussion Laura! I know Judy has thoughts on this because I read them. I perceive that the Alzheimer's Association uses their terms/definition for fund raising purposes and pretty much only for that purpose.

As campaign ads in elections have gotten "meaner" and "more negative" year by year, the Associations pronouncements have followed suit. As we all know, it is harder to raise funds in a recession. Now there is nothing wrong with raising funds to find a medical "cure" for the diseases, I'm sure we all agree, but when that becomes the almost "exclusive" reason for existence (aside from self-perpetuation) then the mission needs to be evaluated/refocused. Don't you agree?

One last question in regard to AA. What is their definition of non-profit? My understanding is that the CEO's salary is up to $1.4 million, from $750,000 a couple of years ago.

Chris Moore
I am heartened by positive and innovative viewpoints here.

marci mckie
I have been working at one of the Alzheimer's Association Chapters since November of 2010 and I work with 8 dedicated people who have compassion and truly care about those with Alzheimer's and other Dementia related illness'.

Yes we do fundraise but we also educate and advocate and provide support. I am the Care Consultant there and I answer Helpline calls on a daily basis, I help to facilitate Memories in the Making an art class for those with a NI, I provide in-home Care Consultations and Home Assessments, I co-facilitate an Early-stage education and support group on a weekly basis. As for my salary...it is minimal...but I am not complaining!

The reward of working with the group of people who I work with and for is so much more! I learn from the Helpline calls and the contacts and I count my blessings daily. In regards to the Alzheimer Association position on diagnosis, new diagnostic criteria and guidelines were developed by the AA and the National Institute on Aging. To learn more, visit www.alz.org/research/diagnostic_criteria.

Carole Larkin
Marci, Of course the association has devoted, caring people who really help others in their chapters, that was never in question. Of course they do good, again never in question. When I was referring to the association, I was referring to the people who run the national association, not your local chapter.

Of course your salary is meager- did you know that your chapter doesn't even get to keep all the money it raises in your local fundraising events? About 28% of all funds you raise goes directly to the National Association, no stopping in your local banking accounts. How much higher would your salary be, or how many more workers could you have to help if you had been able to keep that 28%.

Ask your local CEO/Executive director. H/she will tell you. While you are asking your local CEO, ask them what proportion of the operating monies of the chapter go to Services, as opposed to fundraising. Their answer might give you pause to reflect on the actual priorities that exist at the moment.

Know that the association is centrally administered. that means that national sets the agenda for everything that is done. The local chapters freedom is very small.Your CEO will tell you that too if he/she dare. As for the diagnostic criteria, it's not what the criteria are, it's the method that they are presented. Negativity and scare tactics work wonders for fund raising. For more perspective i refer you to an actual person with the disease, Mr.Michael Donohue .http://www.alzheimersreadingroom.com/2011/07/i-am-sick-and-tired-of-being-oversight.html.

Laura Bramly
Carole, I don't know much if anything about the inner workings of the national Association, only what I have heard through the grapevine. The impression that I am left with is their almost exclusive emphasis on fundraising for a cure and how they don't seem to listen much to the people with the disease, and their lack of flexibility on improving quality of life for people with the disease. This attitude does leak down to local chapters. However, I must say that our local chapter is now doing some innovative programming for people with dementia to encourage socializing, learning and quality of life. One program was developed locally with the Arizona State University. I hope it continues!

Marci, congratulations on the hard work that you do and the care that you put in to your work. However, in the US, it's not just the Alzheimer's Association that is behind the times in terms of day-to-day support of people with dementia and their care partners, it's the whole government and healthcare system. The UK and much of Europe is far ahead of us in that respect, thus making the jobs of frontline people like yourself that much harder.

With regards to the new diagnostic tools, I find it ludicrous that stage one of the disease is "normal." What is stage one cancer?

Carole Larkin • Laura,

I'm very glad to hear your local chapter is doing great programming. Ours in Dallas is doing some too. Also I know of several other chapters around the country doing innovative things. Kudos to them and I'm hoping more are able to follow their lead.



Jennifer Thompson, MHA CDP
The person with AD is slowly losing it all. Today is going and yesterday is gone. The connections that they have within themselves is being taken away. The past is there but it is up to us to make the connection. By knowing their life story we can provide them with their needs. We use
humor, color, aroma, music, programming, and their life story. By engaging them through meaningful interactions each and every day we enhance their dignity and self esteem. While doctors give the diagnosis...we give the support. We make the difference. Wait on no one and continue to be the champion for this dreadful disease. Your support helps those more than you will ever know and they would thank you if they could.

Sent from my HTC
Jennifer Thompson, MHA CDP • To get a better understanding of the seven levels please review Reisberg Global deterioration scale ...level one is no subjective complaints and no deficit noted on clinical review.

Sent from my HTC
Laura Bramly • Jennifer: Thanks for the clarification. The Alzheimer's Association website www.alz.org lists stage one as "No impairment (normal function)." This is the description that most laypeople will see.

Also, Jennifer, I wanted to better understand your philosophy as perhaps exemplified by your previous posting, where you say "The person with AD is slowly losing it all. Today is going and yesterday is gone. The connections that they have within themselves is being taken away. The past is there but it is up to us to make the connection. By knowing their life story we can provide them with their needs." I don't think you will get any argument on this last line. By knowing their life story we can better understand and communicate; it's up to us to learn the new language. But I think a number of people in this forum would take issue with the idea that "the person with AD is slowly losing it all." In the battle to get broader society to see a person with dementia as a whole person but with a memory disability, I don't think that the idea of "slowly losing it all" is helpful and was wondering if that is the idea you meant to convey.

Also, I KNOW how much my support (such as it is) helps those with dementia and I have been thanked numerous times by people with dementia because they CAN! and HAVE! I've been thanked verbally and I've been thanked nonverbally, and I have said many THANK YOUs to people with Alzheimer's and other forms of dementia because they have taught me much and enriched my life immensely.

Jennifer Thompson, MHA CDP • Thank you for your comments Laura. I agree that I have and will continue to benefit so much from those that I assist with care. I have been thanked both verbally and nonverbally but I had to know what I was looking for...finding the joy and creating moments of joy. As hard as it is they will loose most all of their abilities as they continue to progress with this dreadful disease. As a care providers, we all continue to assist and ensure we encourage their abilities as long as functionally possible. I focus my practice on the abilities approach for as long s possible, however I also have to find the realism that even with the best programming they will continue to have losses. As the dementia advances into the late stages this is where they will become totally dependent on their care partner . As much as I would love to say it, however, there is no cure and they will slowly loose it all , everything that makes them who they are...often termed as the long goodbye.

Sent from my HTC

Judy Berry
I would like to comment on Jennifer’s postings also. I do acknowledge we all have different viewpoints based on our experiences and what we have heard.

Having had no healthcare background when my mother was being repeatedly hospitalized (12 times in 7 years) then drugged into oblivion to control her behavior, I could only feel in my gut that she was "Still IN There" and see in her eyes the frustration of not being able to communicate and having people write her off as not there because she was progressing in her disabilities.

Toward the end of her life, when others (professionals) told me she was not in there because she could not communicate or respond as they thought she should, I would see the light in her eyes when I would come, although she could not say my name, I knew she knew me, then the tears would come to her eyes and she would mouth "Help Me".

She was ignored as staff walked by because THEY believed she was no longer in there and had LOST IT ALL.

When I tried to tell them that I knew she was still there and still had emotions and feelings and the need to be validated as a whole person ... I was told I was in denial and that what I saw in her eyes beyond the disability was just my wish for a connection.

They obviously had been sucked in by the myths, such as the long goodbye, that because their disability has progressed that somehow they have changed into someone or something else that you cannot reach no matter what you do, so why do anything.

You are right when you say the disabilities progress to a point that she needed help with all of her ADL's and could not communicate her needs, but I sensed that her behavior was NOT a symptom of the diseased brain but in fact a desperate attempt at communication with people that no longer treated her with dignity.

Chris Moore
Essentially, some with Dementia actually do 'lose it all' but the saddest thing about that is that they do NOT 'lose it all'. Let me explain my reasoning.

As the disease progresses, some people are so adversely affected with memory that they are unable to recognise those they know well - even themselves. In that sense they can end up with no understanding of their external or internal world.

But in many cases, the memories that these sufferers had can still be there - locked away, waiting only for the right triggers to bring them to the surface.

It may be a daily process to bring people's understanding of who they are back.

It may be a long passed version of themselves or family/friends that they are able to recall.

I definitely requires individual attention.

Because most facilities are unable to give the required attention - which varies from person to person and which can, admittedly, be very difficult to accurately define - they do not receive it and can end up totally lost.

Even care from a loved one may end up this way because the knowledge and tools are not available to them.

The whole 'oh, they've got dementia' generalization (the point of the thread) contributes so much to this because all too often people give up on trying - defeated by the (perceived) hugeness of the monster that is carelessly and indiscriminately labeled 'Dementia'.

Monica Heltemes
I would like to share my knowledge and perspective, especially regarding the last few posts. First, the Global Detioration Scale by Dr. Barry Reisberg originated in 1982, so it is not a new scale.

See Dementia Care Central for more information. Also, Level 1 is a normal adult, without dementia. It delineates normal cognitive functioning. It is the same for a scale we use in Occupational Therapy, based on the Allen levels, where Level 6 indicates normal cognitive-functional capacity and Level 1 is end-stage dementia, requiring complete dependence for cares.

Second, I believe both Jennifer and Laura are right in the descriptions. Alzheimer's is what it is - we cannot change the course of the disease. How much of the original "personhood" the person retains as the illness progresses we do not always know. So Laura may be right, the whole person could be there somewhere. But as Jennifer says, that is not at all apparent from the outside. As the caregiver on the outside we must work hard to know the person's prior likes/dislikes, hobbies, interests, occupational, roles in society and family, etc. Then we must find ways to tap into that and help create the moments of joy.

That being said, I do understand that the overwhelming portrayal to the public, is that Alzheimer's is a dead end, nothing to be done - which we know is not the full picture. In fact, a caregiver who has been through this and now helps other caregivers, said that often the families are in denial or in a negative frame of mind for so long, that they miss out on the opportunities they could have had. I think we would all agree that we would like to not see this happen. So perhaps being strong advocates of the positive that can still occur with dementia and how to "live' with dementia is what is needed to balance out the negative (yet, what is reality, as the person does lose abilities). For this reason, maybe "the long goodbye" is not the best phrase. What would be better? Ahh, a new Linked In Post!

Judy Berry
Guess I was too long winded and got booted out before all of my post was there.

The rest of my response was deleted. To make a long story short, after my mother’s death I was determined to see if what I had suspected was in fact true. At 55 with no healthcare training, I built a home, hired the healthcare staff that knew what I didn't and picked those staff carefully to make sure I acquired people who sincerely wanted to try something different. For 11 years we have been providing supportive services to 175 people who had been given up on, like my own mom, mostly because of their challenging and sometimes aggressive behavior. I challenged my staff to Change THEIR Perceptions and tried to debunk the myths of the long goodbye, the person they were throughout their life is somehow gone, fading away. I showed them that when you believe these myths, it effects how you treat persons as they progress into later stage with more disability. Whether consciously or unconsciously you will give yourself permission to walk by someone calling out or in distress as you will believe they are not there anymore and you cannot make a difference, when in fact as persons progress they just need MORE personal attention and validation of their person to meet their needs.

I taught instead that each individual remains the same whole person they were before their diagnosis with the same emotions, feelings and needs as they always right until their death. In fact, as disability progresses their emotional and spiritual needs are heightened and they need more validation, understanding, patience and effort on the part of the care partner to discover and meet their needs.

In 11 years of learning and using this philosophy we have been able to continue the emotional connections with our residents’ right through their death. WE have learned to communicate with them, sometimes using non-verbal communication. We treat everyone with the respect and dignity they deserve as whole people right through their death. Because of our success we have evolved to take many of the people that have similar experiences as my mother, repeated hospitalizations for behavior and overmedication. We have been able to eliminate most all aggressive behavior 93% while reducing psychotropic drug use by 40% by focusing on discovering and meeting the underlying emotional need behind the behavior. We do not have the common behaviors of wandering or sundowning or many other need based behavior because we take the time to discover, understand and meet the need and validate all feelings because they are real.

Most of our staff can now teach family members and others by modeling how to be there with their loved ones right until death. Changing their perception by showing them how to communicate with their loved one and to speak the non verbal language of persons with advanced dementia, debunking the myths that their loved one is either gone or fading away has proven to enhance the lives of the person with dementia and eliminate the family stress brought on by the belief that they are losing the person they loved long before their actual death. I realize that for many this concept of the whole person remaining right until their natural death is hard to grasp. I only wish that others could see what we see every day! It is truly amazing what can be accomplished when you treat all people equally no matter what their disability, and expend the energy necessary to develop the trusting emotional relationships built on respect of each human being as a whole person.

Carole Larkin MA,CMC,CAEd,QDCS,EICS,
is a Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. ThirdAge Services LLC, is located in Dallas, TX.

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Original content Carole B. Larkin, the Alzheimer's Reading Room