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Treatment and Support for Families Affected by Alzheimer's and other Memory Disorders
July-August 2015

Vol 6, Issue 4

forgetmenots
Caregiver
Network
News

A newsletter for
caregivers of loved ones
with memory loss

 


Happy Birthday to

MCLogo 
 


 

 

WHAT ARE THE STAGES OF DEMENTIA?

 

 We are a society that appreciates organization.

We want everything to have a name and a place, so we tend to sort things neatly into categories and cubbyholes.

We like to pinpoint exactly where we are at any given time, to know where we fall in the overall scheme of things.


Sometimes, however, this obsession with categorization can backfire. Take, for instance, the Stages of Dementia. Just exactly how many are there? The Alzheimer's Association says there are three. The Clinical Dementia Rating, on the other hand, recognizes five. The Global Deterioration Scale has seven. This muddies the water - if my loved one is in Stage Two according to the Alzheimer's Association's description, how does that translate to the other methods? Which system is the "official" one?

And honestly, who would want to classify themselves or their loved one AT ALL by something called a "Global Deterioration Scale?" 

So Teepa Snow, international dementia advocate and expert, developed her GEMS to better describe an individual's changing abilities. Far from being a clinical system, Teepa's GEMS seeks to simplify a complex process into one that is easily understood and supportive to all involved. According to Teepa, "understanding the GEMS  levels will lead to an adjustment of expectations and hands-on care to better meet the ever-changing needs of individuals living with dementia and other forms of brain change."

As you read through them, you will likely recognize many characteristics and habits that your loved one exhibits, and may come away with a clearer understanding of why they do what they do. And if nothing else, it's just nicer to think of someone as a "Pearl" rather than "Severe Late Stage," isn't it?

SAPPHIRE. My brain is "true blue." I am aging normally and do not have dementia. It's often hard to find words, but I can describe what I am thinking so you understand. I may talk to myself because I am giving myself cues and prompts. I can learn new things and change habits, but it takes time and effort. Honoring my choices and preferences, when possible, is important. I need more time to make decisions. Give me the details and let me think about it before you need an answer. I am able to remember plans and information but supports are helpful. I like specific prompts such as notes, calendars, and reminder calls. Health changes in vision, hearing, balance, coordination, depression, anxiety, pain, or medication may impact my behaviors, but my cognitive abilities remain the same.
DIAMOND.  My brain is clear and sharp.  I can be cutting and hard to deal with.  I have many facets, so everyone sees me differently.  This can cause conflict among my family or care team as it is hard to tell if I am just being stubborn or truly experiencing change in my abilities.  I can socially chit-chat and have good cover skills.  I want to keep habits and environments as they have always been, even when they are not working.  I am often focused on finances or expenses, and will resist most change including new expectations, routines, or environments.  I can become accusatory - thinking others are trying to trick or conspire against me.  Short brief visits will not expose my true struggles.  Even if you are around me all the time, you may not notice how much I am changing because instinctively you fill in the gaps for me.
EMERALD.  I have little awareness of my changing abilities.  You assume I can take care of myself, but my personal care is slipping, often resulting in poor nutrition or hygiene.  I can chit-chat, but struggle with words, and understand only about � of what you say to me.  I know you are unhappy with me by your tone of voice or expression.  If I am lost in my life, accept the moment I am in, listen and stay calm. Because I am easily frustrated, I often lose control of emotions and may blow up unexpectedly.  When I feel afraid or confused I will want to "go home."  I remember strong feelings, but won't remember details.  My brain sometimes makes up information to fill in the blanks, which makes you think I am lying.  If you argue, I may become resentful or suspicious of you.  I can't be rational and will not want your help if you make me feel incompetent.
AMBER.  I am caught in time and focused on sensation.  I know if I like you based on how you look, sound, move, smell, and respond to me.  It may surprise you when I take, investigate, touch, smell, taste, or take apart items, but it is a function of my brain processing information and it soothes me.  I need to do things over and over, and I like simple tasks.  I will resist what I can't tolerate and I have limited safety awareness.  I have no ability to stop myself and, for safety reasons, you need to respond to me immediately.  I am typically incontinent, may not feel hunger or thirst, and cannot express my needs verbally.  My mouth, hands, feet, and genitalia are highly sensitive due to changes in my nervous system.  Therefore, activities like eating, taking medication, mouth care, bathing, and toileting may distress me.  Please notice my cues and stop if I am resisting.  Wait a few minutes, connect with me, and try a different approach.
RUBY.  My brain is in late stage change.  Transition is difficult for me.  I like simple instruction and would rather you show me, one step at a time, instead of telling me what to do.  My fine motor skills are very limited and I will need assistance with utensils, zipping, buttoning, or brushing teeth.  I tend to hold, pinch, and manipulate items with my thumb rather than using my fingers.  Because I can't control the muscles in my mouth, I may have difficulty swallowing.  My vision has changed and I have no depth perception.  I may misjudge distance, trip over large objects, or get stuck behind doors. I have gross motor reactions and will have either a desire to move or an intense fear of falling.  Pulling or pushing me feels like you are trying to hurt me or make me fall.  Using Hand-under-Hand assistance helps me feel safe and secure.  I still have automatic verbal and rhythmic response.  I enjoy music, your presence, and a willingness to be quiet with me.
PEARL.  My brain is losing its ability to control my body and I am at the end of my journey.  Like an oyster, I am hidden in a shell, but will have moments when I become alert and responsive.  Use our time to be with me, not just care for me.  And please don't talk about me as though I am not still here.  I respond best to familiar voices and rhythmic gentle movements.  I am ruled by reflexes and will startle easily.  I appreciate it when you slowly and gradually shift me.  I am comforted when you place one hand securely on my body while taking care of me with the other.  I have trouble coordinating my swallowing and breathing, and am prone to infection because my brain doesn't organize a response.  I may not be able to leave my body without permission from you. Your greatest gift to me is to let me know it is all right to go.

 

For more Information about Teepa Snow, GEMS, and Positive Approach to Care, Click Here

 

 

Would you like to see Teepa Snow live?  She'll be giving two caregiver workshops in Black Mountain, NC, in September.  Scroll down to Other Community Events for details.

 

 

Recommended Reading

books 
"The Healing Power of Music," AARP July-August  
"With Dementia, Reality Sometimes Hurts More Than It Helps," by Paul Solman

"Is Lying to Someone with Dementia Better Than Being Truthful?"
Alzheimer's Reading Room, July 28 2015


  

  

 

A Hike For A Cause
Johnny Morris, son of MemoryCare's founder Dr. Margaret Noel, left on March 2nd to hike the 2,180 mile Appalachian Trail to raise both awareness about dementia and funds for MemoryCare.   Click Here to read the Asheville Citizen article.


WHERE'S JOHNNY NOW?
On July 17th, Johnny completed his trek by celebrating the sunrise on top of Mt. Katahdin, the northern terminus of the Appalachian Trail!  Thanks to all of you who followed Johnny's Hike on Facebook.  Johnny and the rest of us at MemoryCare have truly appreciated the encouragement and kindness you've shown on our page as he hiked the Appalachian Trail to raise awareness for Alzheimer's disease and funds for MemoryCare.

         Click Here to see his photos on MemoryCare's Facebook page!

You can still make a donation to support Johnny's hike to raise funds for MemoryCare.  Every dollar donated goes directly to the care and support of families facing the challenge of Alzheimer's disease and other cognitive disorders.  

For more information, please contact Chad Conaty, Director of Development and Outreach, at [email protected]

THANK YOU FOR YOUR SUPPORT!

  

  


MCLogo

UPCOMING
    EVENTS

 

 

 

 


 

 


MCLogo

ONGOING
PROGRAMS

Open to the Public
 

MEMORYCAREGIVERS NETWORK
SUPPORT & EDUCATION GROUPS
 
FLETCHER GROUP
 First Tuesdays, 1:00-3:00 p.m.
 Fletcher 7th Day Adventist Church 
Howard Gap Road and Naples Road, Fletcher, N.C.
(just past Park Ridge Hospital)

NEW HOPE GROUP

Third Tuesdays, 1:00-3:00 p.m.

      New Hope Presbyterian Church

 3070 Sweeten Creek Road, Asheville, N.C. 28803

        (across from Givens Estates)

WEAVERVILLE GROUP

Fourth Tuesdays, 1:00-3:00 p.m.

Weaverville First Baptist Church

63 N. Main, Weaverville, NC 28787

(North Buncombe County)

There is no charge to attend any of the Network groups, but we rely on charitable support
to keep the program going.
To make a donation, contact Chad Conaty, Director of Development and Outreach, 
 
For more information about the MemoryCaregivers Network, contact:
Mary Donnelly
828.230.4143
Pat Hilgendorf
828.645.9189

 

"CAREGIVER COLLEGE"
MemoryCare's ongoing educational series for caregivers 
A series of 6 two-hour lectures will be provided for caregivers of persons with memory disorders.  Sessions are designed to improve caregiver understanding of different aspects of dementia care. Related presentation materials will be provided. 
Space is limited so please sign up via our office in advance. 

There is no fee for caregivers enrolled in MemoryCare.
For all others, there is an $85.00 attendance fee for the course.

To register, call 828.771.2219.

Course Content:
What Is Dementia?
Transitioning from Independence to Interdependence
Functional and Behavioral Changes of Dementia
Dementia Treatment Options & Risk Reduction
Maintaining Your Own Health
Dementia and Legal Planning Issues


The next series will be this Fall:

Every Tuesday, beginning October 13 through November 17
3:30 to 6pm
South College, 140 Sweeten Creek Road, Asheville
Led by Margaret Noel, MD 


 

SCROLL DOWN

 

for MORE COMMUNITY EVENTS!

 

 

Caregiver Network News is made possible by the charitable support of donors.
It is an auxiliary program of

   MCLogo

Our Mission is three-fold:

To provide specialized medical care to older adults with cognitive impairment;

to support caregivers with education, counseling,and improved access to services; and to provide community education.

 

MemoryCare relies on charitable donations for operations.
Please consider MemoryCare in your estate planning.

To make a donationCLICK HERE.

Click this link to visit our website:

www.MemoryCare.org

 


speaker at podium
Do you need a program for a group event? 
Public education is not only a part of the President's National Plan to Address Alzheimer's Disease, it's a part of MemoryCare's mission statement.

The MemoryCaregivers Network staff can provide speakers on a variety of subjects, including Recognizing Early Warning Signs of Memory Loss, Facts and Fiction about Dementia, Better Communication Techniques, and more. 

Contact Mary Donnelly at [email protected],
or Chad Conaty, Director of Development & Outreach, at [email protected]

 



OTHER COMMUNITY PROGRAMS & EVENTS
(The following programs are not part of MemoryCare but help our community by serving those impacted by memory impairment.)

Black Mountain Neuro-Medical Treatment Center's
Dementia and Aging Conference

Challenging Behaviors - Resistance to Care
and 
Humor and Caregiving 

presented by

Teepa Snow, MS, OTR/L, FAOTA
International Dementia Expert
Founder and Director, Positive Approach to Brain Change

Friday, September 11
8:00am - noon  
and 
1:00pm - 5:00pm
(the afternoon session is a repeat of the morning session)

Blue Ridge Assembly, Black Mountain, NC


$30 for professionals, $10 for family caregivers
Pre-registration required - deadline is September 7
To register, send check or money order to:

Black Mountain Center Foundation, Inc.

932 Old US 70 Highway

Black Mountain, NC   28711

 

Please include your name, address, employer (if applicable), telephone and email.  Your registration will be confirmed by email.
For more information, call the Black Mountain Center at 828.259.6700.



 

SIDE BY SIDE SINGING -Come Sing with Us!

SUMMER SESSION
 Biltmore United Methodist Church (Community Events Center)
376 Hendersonville Rd, Asheville
Wednesdays at 1:30pm
 beginning July 15 through August 26
Mark your calendars!

Sessions are open to anyone open to experiencing the health benefits and FUN of singing in a group!  You need not be an experienced singer or be able to read music to participate.  The group welcomes those with memory loss and their caregivers.  Singing lasts for one hour, and is followed by light refreshments.

All sessions are free.  
For more information, email Ruthie Rosauer at [email protected],

 

Memory Loss Caregivers of East Buncombe
An education & support group for caregivers
sponsored by the
Highland Farms Residents' Corporation

Meets every second Tuesday
9:30-11:30 a.m.

Free and Open to the Public

Lounge Room 3 (lower level), J-K entrance of  Brookside Building 
Highland Farms Retirement Community, Black Mountain, NC

For more information, contact: 
Mary Donnelly
828.230.4143
Pat Hilgendorf
828.645.9189

 

Area Support Groups for Persons Living With Memory Loss
The New Hope Group
1:00-2:30 p.m. on the third Tuesday of each month
(meets concurrently with the MemoryCaregivers Network New Hope Group above)
Pre-Screening Required, contact Cannan Hyde, 828.357.8307 or cannanhyde@att.net 
The Biltmore Group
1:00-2:30 p.m. on the second Thursday of each month
Biltmore Methodist Church
376 Hendersonville Road Asheville, 28803  (Exit 50 off I-40)
Pre-Screening Required, contact Cannan Hyde, 828.357.8307 or cannanhyde@att.net
The Highland Farms Group
9:30-11:30 a.m. on the second Tuesday of each month
(meets concurrently with the Memory Loss Caregivers of East Buncombe above)
Contact Mel Kelley, 828.301.0529 or [email protected] 

The Hendersonville Group
1:30-3:30 on the fourth Tuesday of each month
Mud Creek Baptist Church
 Contact Patty Williams at 828.692.1262 or [email protected]

Initial screening required for all early-stage groups.

 

memory cafe logo
Memory Cafes
A Social Gathering For Those with Memory Loss and their Friends & Families

First Baptist Church, Asheville
Third Thursdays 1-3pm
5 Oak Street, Asheville, 28801
828-252-4781     [email protected]

Calvary Episcopal Church, Fletcher
Third Saturdays 2-4pm
2940 Hendersonville Road, Fletcher 28732
828-684-6266    [email protected]

Sylva First Baptist Church Fellowship Center
(collaboration with First Methodist, First Presbyterian, & St. John's Episcopal)
Second Thursdays 10am-12pm
669 W. Main St, Sylva, 28779
828-452-2500    [email protected]

Hendersonville First Baptist Church
Second Mondays, 1-3pm
Crosswalk Building, 577 Buncombe St, Hendersonville 28739
828-388-1421    [email protected]

Come for Fun, Relaxation, and Socializing in a Caf�-like Setting! 

 

 

NOTABLE QUOTABLE




"I'm still here, 
but yet I'm gone.
"
  
 
 
- Glen Campbell, I'm Not Gonna Miss You  

 

 

Caregiver Network News is written and edited by Mary Donnelly.
Contact [email protected] for more information.
 
Click Here to subscribe to Caregiver Network News.
 
Click Here
 to access our archives and read previous issues. 

Mary Donnelly
MemoryCare