The Word: Dementia

Many individuals and groups have tried to drag the word "dementia" out of the closet and into full view. Doing this is the best way to confront the issue and the stigma attached, however, now it seems some formerly strong voices are backing off, determining that"dementia" is a word that is just too frightening. Because of this people are turned off to a conversation on the subject before the subject is even discussed.
This back and forth has made me confused. Am I supposed to tiptoe through the tulips, so to speak, or shout out the word loud and clear? Can we make a difference in educating others if we are afraid to even utter the word? I understand, on the one hand, the need to proceed with due caution; I also understand that hiding the truth means we will never truly face and solve the confusion and misconceptions about "dementia".
Dementia takes various forms, some less severe, others terminal. Regardless of the form, let's talk about it. Let's discuss the issues and angles. Let's decide how we can make a difference in the lives of those in need.
Let me know - should we disguise dementia and present it as a potential cognitive decline, especially as we age, but that people can live long and well inspire of it?

What Is a Dementia Friend?

Many say we should just throw out the terms dementia and Alzheimer's because of the stigma attached to them. The problem with tossing these words is that we do not really face the reality of forgetfulness that permanently changes the life of an individual and by extension, that of the family. Working as a presenter for Winnemucca and Nevada Dementia Friends, I have come to believe that by addressing the terms, defining them, and then guiding family, friends, and my community to a better understanding, we will be better educated, enriched, and prepared to assist those in need.
A dementia friend supports:
Health care that promotes early diagnosis and uses dementia care best practices along the continuum;
Businesses that offer informed services and environments for customers and employee caregivers;
Dementia-friendly public environments and accessible transportation;
Residential settings that offer memory loss services and support;
Dementia-aware and responsive legal and financial planning;
Caring communities of faith, first responders, law enforcement, and government services

Winnemucca is working to measure up to each of these standards - how well informed and progressive is your community?

Surviving an Alzheimer's Diagnosis

First, be certain that the diagnosis is correct. Trained neurologists or gerontologists can provide the best information after a thorough examination. If indeed, the problem is Alzheimer's make certain that your legal and financial matters are in order - clarify now so that difficulties can be avoided in the future. Find out about all of the health and social services available and then take full advantage of these.
Continue a good relationship with your attending physician. If your doctor is too busy to listen, it may be time to search for a new one. Support is so important.
Remember - and remind yourself periodically - that you are not alone. Begin attending a support group or use telephone and online services. Talking with others really is beneficial.
And as much as possible, remain positive. Find the goodness and calm in the present. You are important, valuable, and deserve dignity and respect.

Emotional Relationships and Dementia

Alzheimer's and other dementias slowly rob an individual of the power of emotional regulation. Roles as parent or spouse change irreversibly and you, the caregiver, are quite likely left with feelings of loneliness, helplessness, and betrayal. Grieving after death is accepted as natural; grieving during painful cognitive decline is often not realized as a natural part of losing one we love over months and years. Anger and denial may fill the void of a diminished relationship; blame and depression may also result. The happy retirement disappears as full-time caregiving fills your life.
And then, of course, guilt waltzes in to destroy the last shreds of confidence. "If I had only been kinder, more patient, more understanding, more..." Often you cannot hold these behaviors accountable because this frustrating loss is so long, debilitating, and devastating. A support group can help; a counselor can ease pain; good friends (who listen and do not advise) can make a difference as tough decisions must be made. Should this surgery take place? Would Dad be happier in a daycare setting instead of home alone? Would Mom prefer long-term care over the tangles and fights that currently ensue?
As for the caregiver, there is life beyond and after Alzheimer's and other dementias. There are assistance programs and ideas for your future available through family, friends, support groups, and the Alzheimer's Association. Do not be afraid to seek assistance and to receive support.

Adding to Your Coping Portfolio

Patience can wear thin when caring for someone with Alzheimer's disease or other dementias. It is important to remember that your loved one is doing the best he or she can while living with confusion and disorientation. Although it may seem like some of the troublesome behaviors are intentional - just to get your goat - these are rarely on purpose. You must just grin, take a deep breath, and become realistic with expectations. Much of these strange occurrences are simply out of your loved one's control. They seem to just pop up out of the blue.
Think about it. Imagine forgetting where you are going, where you have been, and why you considered either. Easy tasks can become insurmountable - getting dressed, preparing a bowl of cereal, using gadgets like microwaves and washing machine. Think of the insecurity, the emotional stress. In fact, sometimes if you watch carefully, you will note that some of your loved one's actions are reactions to your attitude and demeanor.
And so it is you, the caregiver, who must change. As abilities become limited, you'll need to alter your expectations and reactions. A routine can help. Sameness provides security. Get up at the same time, have clothes pre-laid out for easy access and dressing, have simple selections for meals. Make tasks simple. Instead of, "Here. Get dressed!", hand out items in the right order for getting dressed and in the correct orientation. If, even through the best planning, the socks are forgotten or the shirt is on backward, live with it for today and avoid confrontation or anger. Tomorrow gives you another chance.

How to Cope with Alzheimer's Disease

     Alzheimer's is a progressive disease with no reversal, no prevention, and no cure. With those horrible words being read, you can now focus on the future. That is one of the greatest challenges of facing such a terrible disease. You want to be certain - or as certain as possible - that your diagnosis or the diagnosis of a loved one is correct. Sometimes things like a UTI or a contra-indication from a prescription can create behaviors similar to dementia. Who ever thought that a urinary infection would be a relief? But we know that that is far better than hearing the words, "Alzheimer's disease".
     The process of Alzheimer's disease is unpredictable. While functional abilities begin to fade, there will be moments when everything seems just fine. The forgetfulness appears as a bump in the road. Although change in function and behavior are inevitable as the disease progresses, the timeline is unpredictable. The important thing to focus on is changes that present potential danger (driving or leaving a stove burner on high), wandering into unknown/unsafe places, or becoming violent. These may force you to think about getting additional assistance and no longer living alone.
     But there are many things that someone with Alzheimer's can still do during these slipping away stages: take a walk, help with daily chores, travel short distances with the family, play simple games, and definitely laugh and feel love. Learning to cope with decline is essential.

Dementia Friends

After a wonderful information session with Dolores Cox, the Dementia Friends information team is rolling. The 5 members include Robin Gillis, Keeli McClintick, Sharon McAllister, Cary Walter, and Gini Cunningham. The last 4 held their first session Tuesday, June 19th, at the Pleasant Senior Center in Winnemucca. 7 attendees are now deemed "Dementia Friends". With this completed, the team is raring to go on more community events.
Following the information session and question and answer period, each attendee received their certificate of completion, a decal with Dementia Friend - Nevada for car or shop window, and a lovely bag of Keeli's delicious home-baked cookies.
Patty Ellifritz who was in attendance provided our team with matching t-shirts with the saying: Proud to Be a Dementia Friend. Way cool!!