Slaying the Dragon

This image of The Dragon Slayer found on Countocram at: http://countocram.deviantart.com/art/the-dragon-slayer-42594602

This image of The Dragon Slayer found on Countocram at: http://countocram.deviantart.com/art/the-dragon-slayer-42594602

I’d never thought of myself as a dragon slayer before, but when I consider what I enjoy most about my work at the Alzheimer’s Association, Georgia Chapter, it seems a fitting metaphor.

What dragon do I get to slay on a regular basis? The dragon of ignorance. I teach family caregivers about the dementias, about behaviors that accompany dementias beginning in about the middle stage of the disease, and how to communicate more effectively with their loved one who is losing the ability to remember, reason, understand, and speak.

I can’t tell you how many families get a diagnosis of a dementia – Alzheimer’s, vascular dementia, dementia with Lewy bodies, fronto-temporal dementia (to name just the most common forms) –  and have little or no idea how important it is to learn about their form of dementia and how to manage the care of their loved one.

To combat the disease of ignorance, I get to go out into the community, or conduct a series of classes here at the Chapter offices to help caregivers understand what is happening to their loved one, and help them to develop effective strategies for coping with the changes.

My favorite weapon for slaying the dragon is the 8-week class series, Living with Alzheimer’s for the Caregiver. During these 8 weeks, I have the pleasure of bringing caregivers into the light of confident, competent caregiving in meeting the challenges in each of the 3 stages of the disease: early, middle and late. During the series, we weave ourselves together into a supportive group of friends. Along the way of learning, we laugh, and we enjoy one another’s company while appreciating each one’s struggle to provide the best possible care for themselves and their loved one.

Today, a caregiver asked me if I haven’t heard it all and if I don’t get weary of the stories. I told him: “Yes, it’s true that I’ve heard many stories. But I’ve never heard your story. And it’s your uniqueness that keeps me alive and present.” Alive and present to slay one more dragon on his behalf!

Sarah Carson

Sarah Carson is a Licensed Clinical Social Worker who has been with the Alzheimer’s Association, Georgia Chapter for nearly twelve years.

Alzheimer’s Awareness Day 2015: So Much Accomplished!

Thursday, February 12, was Alzheimer’s Awareness Day at the Georgia State Capitol.  Of the 200 Georgia advocates attending the event, over 75% indicated that they had never attended before.

Following an update on the Chapter’s Platform issues, we joined Governor Nathan Deal and several supportive legislators for our annual photo opportunity.  Everywhere you turned in the Capitol and the Coverdell Legislative Office Building was a sea of purple.

Posing on the Capitol steps with Governor Nathan Deal

Posing on the Capitol steps with Governor Nathan Deal

Some of our advocates went in constituent groups to meet with their state senator or state representative in their offices, at previously scheduled appointments

The advocates were treated to a lunch program including the following speakers, talking about our Georgia Alzheimer’s and Related Dementias State Plan or about our current Platform issues including Chairman Wendell Willard, sponsor of HB 72—Abuse, Neglect and Exploitation Bill; Kathy Floyd, Executive Director of the Georgia Council on Aging, reviewing HB86—the Repositioning of the Aging Agency Bill, sponsored by Chairman Tommy Benton; and Maureen Kelly, addressing the “End the Wait Ask,” reviewing the $10 million appropriations request for funding for Home and Community-Based Services.  Advocates who did not have appointments began going as constituent groups to call their senators or representatives out of Session.  By the end of the day, all 56 Senators or their staff members, and all 180 Representatives or their staff members had been visited by one of our advocates or staff—all received packets providing our Platform, fact sheets on each of our issues, and general fact sheets about Alzheimer’s disease.  97 advocates spoke directly with 55 senators or representatives—presenting the face of the Association and the face of Alzheimer’s to that legislator.  From the various meetings with legislators and staff, over half of the current seated legislators have a personal connection to Alzheimer’s or a related dementia.

Dr. James Bulot, Director of the Division of Aging Services, and Chairman of the Georgia Alzheimer’s and Related Dementias State Plan, updated the advocates on the implementation of the State Plan.   Dr. Brenda Fitzgerald, Commissioner of the Department of Public Health, spoke on her agency’s role in the State Plan implementation and on Alzheimer’s as a public health crisis in Georgia.

A highlight of the lunch program was delivered by Shelly Hill, an advocate, family caregiver, and wife of Senator Judson Hill—sharing her personal story of financial exploitation of her father, and the need for HB 72 to be passed.

Shelly Hill holds a photograph of her father, her reason for becoming an Advocate.

Shelly Hill holds a photograph of her father, her reason for becoming an Advocate.

Prior to coming to the Capitol, many advocates attended training at one of 14 training opportunities provided across the state in the Chapter’s seven regions.  Additional advocates reviewed the Power Point training module on the Chapter’s advocacy page, to prepare themselves for the day.

Now, that the update and report on the day is completed—I want to thank each advocate, each lunch program participant, each staff member, and each of the many partner organizations who joined us in making our Eighth Annual Alzheimer’s Awareness Day at the Georgia State Capitol a success!  …and as an example of your hard work that day:

  • HB86 unanimously passed the House today…now, it crosses over to the Senate and goes through the process there…keep up the GREAT work!

So, when we are asked why we advocate, we simply refer to those we represent who live daily with the disease—persons with dementia, family caregivers sharing their journey, professional caregivers who choose to care, physicians, nurses, hospice, and long-term industry individuals—and say “How can we not advocate?”—how can we not make the time to develop plans; e-mail, call, and visit legislators; attend Awareness Day at the Capitol, and use our VOICES as loudly and as long as needed to raise the awareness and concern that any one of us could be next.

I am committed to stay in this fight until we overcome this disease—I am committed to do all in my power as an individual and as a staff person of the Association to be a catalyst to bring about the end of Alzheimer’s in my lifetime.  How about you?

Parksinson’s Disease: Understanding a Complicated Condition

The following data is from the National Institute of Health, originally posted at: http://newsinhealth.nih.gov/issue/nov2014/feature2 . You can find additional information about Parkinson’s Disease HERE on the Alzheimer’s Association website.

Parkinson’s Disease
Understanding a Complicated Condition

Illustration of an older man standing with a cane and a woman holding his arm to aid balance.

We rely on our brains for every movement we make, whether writing, walking, talking, or even sleeping. But a serious brain disorder like Parkinson’s disease can rob a person of the ability to do everyday tasks that many of us take for granted. There’s no cure, but treatment can help. And researchers continue to seek new understanding to improve medical care.

Parkinson’s disease evolves gradually over time. The early signs may be barely noticeable. A person’s movements may change slightly. You might notice slowness, rigidity, or difficulty balancing or walking. The person’s face may lack expression, or handwriting may become small and cramped. Eventually, these changes can become more severe and interfere with daily life. It might become harder to sleep, think, eat, speak, smell, and make decisions. As the disease worsens, symptoms may become difficult to control.

Parkinson’s disease usually arises after age 50, but can also appear earlier in life. It affects about 600,000 people nationwide. As Americans age, the number of people with Parkinson’s disease is expected to rise dramatically.

Parkinson’s disease is a neurodegenerative disorder, which means that brain cells gradually malfunction and die. The disease damages brain cells that make a chemical called dopamine. The resulting dopamine shortage causes the movement problems that mark Parkinson’s disease.

Although researchers don’t yet understand what causes Parkinson’s disease, the body’s genes likely play some role. A number of genes have been linked to the risk of developing Parkinson’s. “Diving deeper into the genetics of the disease is providing us with hints about the underlying biology,” says Dr. Beth-Anne Sieber, an NIH expert on Parkinson’s disease.

But genes are only part of the picture. NIH-funded scientists are searching for other factors that might lead to the disease. One goal of this research is to discover new targets for drugs that can slow disease progression.

If you notice any of the common signs of Parkinson’s disease, see a health care provider. Your doctor may refer you to a neurologist, a physician specializing in the nervous system. A careful exam and certain tests can help with diagnosis.

To treat Parkinson’s, doctors prescribe combinations of medicines that work to regulate dopamine in the brain. “This helps free up people to move better and lessens the troubling movement problems of Parkinson’s,” Sieber says.

A surgical procedure called deep brain stimulation is an option for some patients. In this approach, a small pacemaker-like system is placed in areas of the brain that control movement.

Research suggests that eating right and exercising may help reduce or delay symptoms. Scientists are studying how much and what kinds of exercise can most help improve patient health and quality of life.

Many potential new treatments for Parkinson’s disease are now being studied in NIH-funded clinical trials. “There’s a great need for people with Parkinson’s and their families to participate in clinical research,” says Sieber. “Participation is key.”

Train Your Brain!

We talk a lot about what to do after a diagnosis of dementia, but what can we all do to keep our brains as healthy as possible now? Our sister chapter – Central & North Florida Alzheimer’s Association – have worked with a local health foundation to put together this great website about brain health – complete with news, articles and even brain games! Check out more on their website by clicking HERE.

Here are their top 6 Brain Commandments:

1. Eat smart.

The brain is a marvelous machine, and it needs the right fuel to run most efficiently. That means seeking out foods rich in Omega-3 fatty acids, ALA and other healthy fats, choline, and antioxidants, which help power the brain to build new connections and prevent declining cognitive abilities as we age. Learn more about how and why to follow a brain-healthy diet.

2. Work out.

Regular aerobic exercise — no matter when in your life you start it — has proven brain-boosting benefits. Exercise increases blood flow, which means more oxygen and nourishment gets to the brain. It helps relieve anxiety and improves mood, and can even make you smarter by creating new and better connected brain cells. Learn more about how working your muscles works your brain too.

3. Chill out.

When you’re stressed — whether momentarily, as by a loud noise, or long term, as by a difficult life situation — your brain and body focus on survival. While the occasional adrenaline rush helps build new neural pathways, chronic stress can lead to brain shrinkage, negatively affecting both memory and mood. Learn more about relaxing your way to a really healthy brain.

4. Hang out.

Research shows that seniors with rich social networks are much less likely to develop Alzheimer’s Disease and dementia than their less-connected peers, even when they’ve shown the physical beginnings of the disease. Exactly why is a still a mystery, though a large group of friends is associated with a larger amygdala, a part of the brain that is responsible for emotional processing and memory storage. So go make some friends!Learn more about how social butterflies build stronger brains.

5. Challenge yourself.

Learning something new is more than a matter of exercising the brain you’ve got — it actually means building more brain. As we exercise our mental facilities, the brain encodes that information by making new connections between neurons. As these new connections are used again and again, the neurons become one unit dedicated to working quickly and efficiently. The more you learn, the better you get at learning. Learn more about your brain’s love affair with learning.

6. Find your purpose.

All brains collect plaques and tangles as they age, but those don’t always manifest as disease. Interestingly, people who have some driving purpose in life — whether it’s dedication to a cause, volunteerism, a hobby, or art — have less cognitive impairment than those that don’t, even when their brains show similar patterns of wear and tear. Perhaps it’s the power of positive thinking, or the brain’s way of reaching a defined goal, but clarity of purpose seems to keep us thinking more clearly. Learn more about living with purpose.

 

Thanks again to the Central & North Florida Chapter for their assistance in putting this together. The link to their BrainUP page is: http://www.brainupfl.org/.

 

SAVE THE DATE!

mark your calendars

 

We just heard last week from Augusta Program Director Beth Williams about some of her inspiration for advocacy.  Well get ready, it’s time for us all to make our VOICES heard. This year’s Alzheimer’s Awareness Day is going to be held at the Georgia State Capitol on Thursday, February 12th. This is a state-wide event and all are invited to attend.

This is an opportunity to tell YOUR story, as a diagnosed person, as a caregiver, as someone who has lost a loved one – to Georgia law-makers. The importance of legislators hearing our stories cannot be stressed enough – how else will they know that more resources and services are needed for their constituents facing dementia? How else will they know that the epidemic of dementia is real in Georgia and requires more research and attention? They won’t – they won’t know unless we all raise our voices and tell them. 

The Alzheimer’s Association staff and volunteers will be there with you to help you with the details of the day (the capitol can be a confusing place!), you don’t need to have been a political-science major to join us. All you need to do is register and show-up! We’ll provide everything else. Details about the day and a link to online registration can be found by clicking HERE.

Join us on Thursday, February 12 2015. Raise your VOICE with ours and let’s make a difference in the lives of everyone impacted by dementia. 

Got Advocacy?

 

beth_nametag

Lately, I’ve been thinking a lot about the meaning of advocacy.   I used to wear a name-badge that said “Beth Williams, Advocate for Life”.  To me, it meant that I would always be an advocate in some way, where I offered a voice to the voiceless.  It always surprised me that such a small indicator of my belief system would garner such a full-size reaction.  Most times, I was approached by someone who instinctively knew the meaning of “Advocate for Life”.  Other times, those three, simple words triggered a slew of questions by someone demanding the meaning of my cryptic/mysterious slogan. My explanation would receive an enlightened “Oooooh!” or just create more confusion.  And then, someone would read my name-badge and profess that they too, were against Capital Punishment and/or Abortion!!

I suppose, the meaning of advocacy is influenced by one’s personal experiences and values.  So, advocacy means, what it means, based on who you are and where you are both geographically and in which era you live.  According to Merriam-Webster’s definition, *ad·vo·ca·cy is a noun that means, the act or process of supporting a cause or proposal; the act or process of advocating something (*http://www.merriam-webster.com/).  How does “supporting a cause or proposal” manifest?  Do you write letters to officials or can you pray for a cause.  Do you organize a movement or revolution or can you send a financial donation?  Again, it seems, the act of advocating is personal and depends on one’s current circumstances, passion for a cause and self-expression. Working for the Alzheimer’s Association, provides numerous opportunities for improving my skills as an advocate.  Whether, I’m reassuring a family as they embark on their journey with this disease or traveling with volunteers to the GA State Capital for Alzheimer’s Awareness Day, I know I can impact their quality of life.  It just takes time, supportive co-workers and a mindset that one can make a positive change.

I wore that name-badge diligently for 6 or 7 years, when I was a Long-Term Care Ombudsman.  I even gave a select group of kindred, co-workers their own badge.  We were united in our cause, to preserve the rights of nursing home residents.  As a result, our status of advocate was realized because it was our job to advocate.   Right?  Hmmm, what about the 4th grader who speaks out against bullying to protect a friend or citizens who form a neighborhood watch to keep their families safe? Aren’t they advocates?  Does advocacy only take place during formal situations or can advocacy spring up unplanned when needed?  My quest for this year is to define advocacy as it affects my life and the people and causes I care about.

I’ll keep you posted,

P.S. Just so you know, I’m always ready for a revolution.  I got the placards and bullhorns at the ready!

Beth Williams is the Program Director at the Augusta Regional Office of the Alzheimer’s Association, Georgia Chapter. Her professional background includes work in nursing home administration, advocacy as a long term care ombudsman and academics as a professor of gerontology studies.

Traveling with Dementia

Many times people assume that once a diagnosis of dementia has been made, traveling is no longer an option. Or, on the other hand some people assume that even though a diagnosis of dementia has been made, the person diagnosed will continue to want to travel in the same manner that they always have. Neither of these assumptions are necessarily true. As we wrap up our holiday season, here are a few tips about traveling with dementia that may be helpful along the way.

A few things to remember:

  • Many of us have probably experienced the brief disorientation that comes with waking up in a hotel room when traveling and having to think “Now where am I again?” A person with memory loss may feel this way often on the trip, or for longer – you’ll want to be ready to remind and reassure them of where they are and where you’re going/why.
  •  Be sure to pack your patience as well as your sense of humor and adventure! You’ll also want to be sure to pack things that make the person with dementia feel the most comfortable/relaxed – favorite clothes, relaxing music for car rides and any other favorite items that may be comforting.
  • Be ready to take breaks from traveling and activities so that the person with dementia can “re-charge” as/if needed.
  • Try to stick to the person’s normal routine as much as possible when traveling – keep bathroom breaks, mealtimes and rest times according to the normal schedule if at all possible.

Documents to Take with You when Traveling

  • Doctors’ names and contact information
  • A list of current medications and dosages
  • Phone numbers and addresses of the local police and fire departments, hospitals and poison control
  • A list of food or drug allergies
  • Copies of legal papers (living will, advanced directives, power of attorney, etc.)
  • Names and contact information of friends and family members to call in case of an emergency
  • Insurance information (policy number, member name)
  • The Alzheimer’s Association 24/7 Helpline Number: 800-272-3900

Suitcases

Read more: http://www.alz.org/care/alzheimers-dementia-and-traveling.asp#ixzz3MepeyFmR

Helpful Hints for Caregivers During Holiday Gatherings

Here it is, the “most wonderful time of the year”.  For dementia caregivers, it can also be the most STRESSFUL time of the year.  How can caregivers uphold family traditions – big family dinners, holiday parties, caroling with the choir – and keep from upending the routine of their loved one with dementia?  Well, a few tweaks are in order…

  • Consider moving the family gatherings to someone else’s home and have a mini-gathering at your home/your loved one’s home (if they are in a memory care residence).  Ask family and friends to schedule a 15 to 30 minute visit with your loved one and then, move on to the main event.  A short, meaningful visit is better than a longer, more drawn out visit with a person with middle-late stage dementia.

In my family, my mother would set up an area in my grandmother’s room where she could enjoy her comfy chair. Then, just a few people at a time stop would be invited to stop in and visit with her.  The noise of a large household full of people can be very exhausting.  I thought that was a lovely way to include my Mimi in the festivities without overwhelming her.  Don’t feel compelled to include your loved one in every event.  Routine is so important in caring for someone with memory impairment.  It is a gift to them to allow them to stay in their routine.  Though they might fare well during the event, they are likely to have a couple of tough days that follow as a result of being over-tired and over-stimulated.

  • Try out new traditions that are easy on the person with dementia. For example, try taking an evening drive to see the holiday lights. During sundowning hours, which typically begin anywhere between 3:30 p.m. and nightfall, a drive may be a welcome distraction. It will help them meet the urge to “go somewhere” and can also be an enjoyable way to unwind and enjoy some of the holiday festivities before bedtime.

The best advice for helping your loved one navigate the holidays is to take your cues from them.  When your loved one is agitated, starting to wander, getting fidgety…it’s time to decompress, move away from crowds and back into quiet familiarity.

During this holiday season friends and relatives may have questions about the disease: “How will this progress?”, “Are these symptoms and behaviors normal?” , etc. Please keep in mind that the Alzheimer’s Association is just a phone call away 24/7 at 1-800-272-3900.  We are here to help you with your holiday planning and to help you manage the challenging conversations and situations that arise during this busy time.  Invite your loved ones to visit our website at www.alz.org.  It is chock full of useful tips and information and even an online support forum. The Alzheimer’s Association also has educational programming in your area that may help you become an even better caregiver.

If anyone asks you what they can do for YOU this Christmas – don’t be shy! Be honest! What would help you most as a caregiver? A home-cooked meal? A few hours of respite for you to rest or attend a class at the Alzheimer’s Association? Try to be prepared with an answer that will serve you and your loved one well – people usually really do want to be helpful but they don’t always know how.

We wish you all a very happy holiday and a bright, happy and safe new year!

For more tips, visit: http://www.alz.org/care/alzheimers-dementia-holidays.asp

Chris Ryan via Getty Images

Chris Ryan via Getty Images

“What do you DO, exactly?”

I am a Care Consultant at the Alzheimer’s Association, Georgia Chapter. When people ask me what I do, I’m never exactly sure how to sum it up succinctly. It’s not because I don’t know what my job responsibilities entail – I do. I provide families and individuals with a variety of resource information, with education about the disease and I help them develop a care plan for themselves or a loved one. But there is something else that I/we do at the Association for folks who reach out to us – something that is harder to define.

I know what I don’t do: I don’t tell people that it is all going to be okay – it’s not. Unfortunately part of my job is admitting to people that it is not going to all be okay. BUT, I tell them, you are not alone in this. This gets to the core of what I do; I am WITH people – letting them know that this is hard – probably the hardest thing they’ll ever go through and that this is not something they have to go through alone. Here is a quote from a caregiver who recently reached out to us:

You cannot imagine how much I appreciate your email.  The support from the Alzheimer’s Association has truly been a life line and I only wish I’d reached out sooner.

It’s not something I can put on my resume’, but the voices of the people I’ve worked with echo in my mind and heart. I know I have made a difference even though sometimes there are no good answers for the perfectly good questions that people ask me. More often than not, all I can do is be with people in the midst of the sadness and the difficulty and the frustrations. “Isn’t your job depressing?” people are always asking me. No, it isn’t. Alzheimer’s disease itself is depressing at times, sure. But my job – my job of being with people- is a beautiful, meaningful privilege.

 

Kara Johnson

Kara Johnson

Kara Johnson received her Master’s in Social Work, with a concentration in Gerontology/Aging from the University of North Carolina at Chapel Hill. She has worked in the field of Aging for almost a decade in roles that include the Director of an Adult Day Care and Social Services Director at a Continuing Care Retirement Community. Kara now serves as a Care Consultant at the Alzheimer’s Association, Georgia Chapter where she provides counseling, resources and education to families and individuals impacted by dementia.

Holiday Gifting Ideas for Families Coping with Dementia

Purple Tree

Ornament from the purple holiday tree at the Alzheimer’s Association, GA Chapter

 

The holidays are here again and we always invite people to take the time to carefully consider what types of gifts may be the most appropriate for loved ones with dementia. Here’s our handy Gift Giving Guide - organized by stage of dementia – for those of you who haven’t seen it in the past.

We also want to encourage you to preserve these special moments you have and preserve the memories of years past! Here are some ways you can do that as a family:

1. Record each individual’s favorite family story and make a video! Phones can make great video cameras. There’s even video editing apps!

2. Take pictures, print them and make picture collages, ornaments and scrapbooks.

4. Make legacy books (your life story – or a loved one’s – in your own words). This is truly a gift that will last a lifetime. There are a variety of online templates you can use, or you can just start by going through old photos and writing down stories one at a time. It will take a while, but it will truly be a treasure when you’re done!

Scrapbooks and legacy books make wonderful gifts!

Scrapbooks and legacy books make wonderful gifts!