Guest Post: Accepting a Diagnosis of Dementia

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My mother-in-law’s diagnosis of dementia forever changed the lives of everyone in our family. I remember sitting with my husband in a row of metal chairs along the hallway in the medical facility while she was being examined by a geriatric neurologist. It seemed to take an eternity. Finally the doctor emerged from the scan room and told my husband and me, “She has significant brain shrinkage indicating dementia or Alzheimer’s disease. There is not much we can do at this point. There are medications, but their effectiveness is questionable. Her situation is progressive and will probably worsen over time.”

Neither one of us was surprised. Our concerns had finally been verified. Then two questions immediately came to mind. First, how were we going to provide her with the care she was going to need in the future? And secondly, how were we going to help Nan understand the reality of her diagnosis? It was in these mind-numbing moments that I began my journey into the complicated world of dementia care. Its complexities were unimaginable and I knew its future was unpredictable. And I was afraid; afraid for Nan and afraid for us. The only thing I knew for certain was that Nan’s cognitive skills were diminishing at an alarming rate and she needed help now.

Watching Nan slip down through the stages of dementia has been like witnessing two deaths simultaneously. I know this may sound emotional counterintuitive. Either someone is here or they are not. But this is not the case when someone suffers from dementia. A schism occurs between the mind and the body.

I don’t know when Nan began to separate from the world. I can’t put my finger on the time when her disease finally overtook her mind, and I don’t know if it even matters. But I do know that it seems to have happened in the blink of an eye, sometime when I wasn’t looking. Dementia will trick you like that. It distracts you with its initial symptoms that send you scurrying about on endless missions to solve daily problems and search for cures. It sneaks up behind its victims and snatches them while you are busy making sure that they are taking their medicine correctly and eating a balanced diet.

I wish I had a way to spare you the highs and lows of the acceptance process. I wish that I could catapult you past the pain and make you see the happiness that is possible even in the light of all that you are facing.  But I know that is impossible. So instead, through this blog I will give to the gift of the lessons that I have learned and hopefully, in the end, they will make all the difference.

 

Ronda Parsons

Ronda Parsons lives in Williamsburg, VA and is a caregiver to her mother-in-law who has dementia. She is the author of the book Creating Joy & Meaning for the Dementia Patient: A Caregiver’s Guide to Connection and Hope

 

This post originally appeared on Ronda’s blog: https://thedementiaconnection.wordpress.com/

For those of us who don’t love fundraising…

I am the first to admit that fundraising is not my strong suit. Which is exactly why I work on the programs and services team here at the Alzheimer’s Association and not on the development team. But as I’ve said time and time again, it is going to take ALL of us working together AND fundraising to bring an end to Alzheimer’s Disease.

So for those of you, like me, who would rather hide in the bushes than ask someone to buy your girl scout cookies (true story) – I have some great news. Charity Miles is an app that you can download that raises money for a cause of your choice (pick us! pick us!) and all you have to do is download it and get moving. Seriously. That’s it.

Charity Miles is backed by sponsors who donate 25 cents per mile for walkers/runners and 10 cents per mile for bikers. It’s a fun and easy way to raise money for the Association! This does not replace fundraising efforts for say, The Walk to END Alzheimer’s for example – so just think of it as icing on the cake. The easiest of your fundraising efforts in this fight.

I hope you’ll join in the fun, download the app and get moving! Instructions are below and more information is available at http://www.charitymiles.org/.  Please tell your friends and family too!

THANK YOU for your help in ENDING Alzheimer’s!

charitymiles

How it works:

  1. Download the free Charity Miles app to your iPhone or Android from the app store.
  2. Create an account by logging in with your email address or through Facebook.
  3. Choose the Alzheimer’s Association from the list of charities.
  4. Select whether you are walking, running or biking from the top activities bar.
  5. Press Start and get going.
  6. Walkers and runners earn 25 cents per mile; bikers earn 10 cents per mile, courtesy of sponsors secured by Charity Miles.
  7. When finished, swipe up on the screen and follow the steps to save your miles.
  8. If you’re grateful for the sponsor’s support, please be sure to thank them at the prompt on the screen.
  9. Spread the word! The easiest way to double your impact is to get a friend to join you!

To create or join a Charity Miles online team:

  1. Press the + button in the upper right corner of the screen.
  2. Type in the hashtag and name of the team you’d like to join or create.
  3. Anyone who tags themselves with the same hashtag will be on that team, and you’ll be able to see your collective impact and team leaderboard.
  4. You can join or create as many teams as you want.

Being a Long-Distance Caregiver

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“Something is wrong with mom!”  The realization is frightening no matter where you are, but especially when you live far away from a loved one exhibiting signs of dementia. What can you do when you live hours away and a phone conversation with your loved one turns into a confusing jumble of past conversations or paranoid rants? Lately, I’ve had several conversations with long-distance caregivers embarking on this new and scary journey.

Recently I spoke with *Cassandra, a young woman who is her elderly aunt’s only living relative. Cassandra flies across the country fairly regularly to ensure that her aunt’s bills are paid, home is maintained and her medical needs are met. On her most recent visit, Cassandra arrived to find her aunt’s air conditioner broken, the house steaming hot and her aunt looking unkempt for the first time in her life.  Cassandra felt heartbroken, afraid, embarrassed and unsure of what to do next.

No two caregiving experiences are the same, but the feeling of helplessness is pretty universal when it comes to long-distance caregiving.  There are some signs that long-distance caregivers can be on the lookout for when they are speaking to loved ones or during visits:

  • Repetitive Conversations: Often one of the first things long-distance caregivers notice is that a loved one begins repeating stories in the course of a single conversation. Someone with worsening memory loss may also have difficulty following lengthy conversations.
  • Trouble with finances: Are bills going unpaid? How often does your loved one go to the bank to withdraw money? More than they used to? Check in about finances to see if you notice any red flags in that area.
  • Medication Usage: When you visit, can you tell if medications have been taken every day? If all of the bottles are still full, there may be a problem. Setting up a pill minder is a great intervention, if your loved one can remember to use it.

Like Cassandra, you may have already discovered that you are caring for someone with increasing needs.  You may also be trying to coordinate with other family members, near and far, to agree upon a caregiving plan. All of these challenges can be daunting, but the Alzheimer’s Association is here to help. Part of what I do is work with families locally to help develop a plan of care – everything from legal and financial planning to making referrals for home care, adult day care, living facilities and safety services. The other part of what I do is provide education and training about the disease process – this is especially important when there are lots of caregivers involved. It is nearly impossible to get everyone to agree to a plan of care if everyone can’t agree on what the problems are to begin with! And finally, I am here to provide emotional support to you on this journey and to help you widen your network of support. Caregiving is often an isolating experience and it doesn’t have to be. There are plenty of support groups with people who have been there, or who are there, and who can help you get through this.  Whether you are local or long-distance, caregiving takes a mental, emotional and often times physical toll.

Here are some quick tips to get you started in the right direction:

  • Identify resources and use them.
    Learn about what is available in your community by contacting your local Alzheimer’s Association at 1.800.272.3900 or using our online Community Resource Finder. You can also use Alzheimer’s Navigator, our free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.
  • Reassess care needs during each visit.
    Dementia is a progressive disease, and care will need to be adjusted over time. While someone in early-stage Alzheimer’s may live independently, by the middle stage, 24-hour supervision will be required. Each time you visit, assess the situation to make sure care needs are being met.
  • Keep communication going.
    As a long-distance caregiver, you may coordinate many moving parts. Whether it is with family, neighbors or home health aides, set aside time to regularly discuss the needs of the person with dementia. If the person with dementia lives at a residential care facility, set up a regular time with the managing nurse or physician to get updates and maintain ongoing communication with care staff and friends who visit regularly.
  • Gather pertinent information and keep it handy.
    Make sure you have contact information for physicians, pharmacies, care providers and neighbors, as well as important financial and legal documents easily accessible in case they are unexpectedly needed.
  • Be kind to yourself.
    Living out of town does not mean you aren’t involved or that you don’t care. Get support by connecting with others who are long-distance caregivers through our online community.

LEARN MORE: https://www.alz.org/care/alzheimers-dementia-long-distance-caregiving.asp

The Alzheimer’s Association can be your partner in care. Don’t walk this journey alone. Contact us 24/7 at 1-800-272-3900

*Some details of the families are altered to protect their privacy.

 

Staff Spotlight: Rebekah Davis

This is an interview with Rebekah Davis, who currently serves as the Program Director in the North Georgia Regional office of the Alzheimer’s Association, Georgia Chapter.

Where did you grow up and where did you go to college?
I grew up in Adairsville, GA. I graduated valedictorian from Adairsville High School. I earned a BS in Business Administration from  Reinhardt College (University now) and a MBA from Berry College.

How long have you worked at the Alzheimer’s Association?
My three year anniversary with the Association will be October 1.

What was one of the most surprising things that you learned about Alzheimer’s after you started working here?
I was surprised to learn the fiscal impact Alzheimer’s and other types of dementia are having on our country. It was eye-opening to learn how dementia has and will affect our healthcare system, long term care facilities, emergency response personnel, churches, work places, and communities.

Why do you think that the work you do is important?
The work my colleagues and I do is important because we are here for caregivers and those with dementia at a time when they most need us. When we experience challenging times in our lives, it is helpful to have someone available to support us along the way. People with dementia and their caregivers know they have the Association to support them and advocate on behalf of them.

What is your favorite part of your job?
The part of my job I enjoy most is education. I feel strongly that education and knowledge are empowering. When I help caregivers learn, they are better equipped to provide the best care for their loved one and themselves.

What is your favorite quote from a family or individual that you have worked with while at the Association?                                                                                         Blessed are the flexible for they shall not be bent out of shape. (She didn’t make that up, but it’s a good one!)

Has working here impacted you in any particular way personally?                   Recently I’ve done some reading about the benefits of a healthy lifestyle with regards to Alzheimer’s and dementia. As a result, I am working to make some changes in my own life. I have taken up running again (which had to take a back seat the past year and a half). I am trying to be more mindful of my diet, especially sweets (for someone who loves cake, you can imagine how difficult this is!). I have learned and try to remind myself – I have to take small steps and they will result in big changes over time

Finally, one silly question – what is your favorite food?
Well, this one is a little embarrassing. My favorite food is cake. I like many different types of cakes, but my favorite is white cake with buttercream icing. As you can imagine, I love birthday parties!

 

Rebekah & family going purple for Alzheimer's Awareness month at a Rome Braves game!

Rebekah & family going purple for Alzheimer’s Awareness month at a Rome Braves game!

Clinical Trials: Myths v/s Facts

There’s a lot of confusion about why clinical trials are necessary to advance research and about who is needed to fulfill the roles of participant. Below we have shared some clinical trial myths and facts from our website:  http://www.alz.org/research/clinical_trials/myth_vs_fact.asp   . If you have additional questions about trials or want to get involved with our Trial Match program, please call us at 800-272-3900 or sign up online at: alz.org/trialmatch.

MRI Brain Scan

MRI Brain Scan

 

MYTH FACT
There are already plenty of volunteers. They don’t need me to participate. Alzheimer’s disease is the only top 10 cause of death in the U.S. without a method to prevent, cure or even slow its progression. New treatments for Alzheimer’s cannot be discovered without clinical trials, and many more participants are needed. At least 50,000 volunteers, both with and without Alzheimer’s, are urgently needed to participate. More than 130 Alzheimer’s clinical studies are now recruiting participants in 545 locations.
It’s too late – the disease is too advanced to participate in a research study. There are clinical studies that work with people in every stage of Alzheimer’s. Participating in a trial could have a potentially measurable impact on the disease.
If I join a clinical trial, I won’t receive the same quality of care that I currently have with my doctor.

 

Participants in clinical trials receive a high standard of care. All participants have the opportunity to talk with study staff, and should also continue care with their doctors.

Research shows that people involved in clinical studies do somewhat better than people in a similar stage of their disease who are not enrolled, regardless of whether the experimental treatment works. This may be due to the general high quality of care provided during clinical studies.

If I join a treatment clinical trial, I will get a placebo, and I don’t want that.

 

In a randomized clinical trial, it is often the case that some of the participants get a placebo as part of the trial design. Each potential participant should consider his or her comfort level in not knowing whether they will receive the experimental treatment or a placebo before deciding to join a trial.
There won’t be any clinical trials convenient to me unless I live in a big city, near a major Alzheimer’s disease research center, and/or have my own means of transportation. Alzheimer’s disease research is taking place in hundreds of locations throughout the country. Some clinical studies reimburse travel costs, and some may provide compensation to participants. Information about the latest Alzheimer’s disease clinical trials is available through a number of sources, including Alzheimer’s Association TrialMatch®.
There may be painful or invasive procedures as part of the clinical trial.

 

Each potential clinical trial participant should inquire about the trial design and the potential treatments and procedures they may receive during the study before deciding whether to join a trial. Volunteers can withdraw from a study at any time they or their physician feels it is in their best interest.
It costs too much to participate in a clinical trial.

 

Every clinical trial is designed differently. Some clinical trials reimburse associated travel costs, and some may provide compensation to participants. Still, there may be costs associated with participating, so contact your trial site for information pertaining to a particular trial of interest.
I am going to be rejected from a clinical trial because I have another disease or condition, too.

 

Some people with Alzheimer’s disease also have other chronic medical conditions, such as heart disease, diabetes and cancer. However, they may still qualify for a clinical trial. Each clinical study has different inclusion and exclusion criteria. Check with the trial site, or Alzheimer’s Association TrialMatch® for more details.
If there is a clinical trial that could help me, my doctor will tell me about it.

 

More than 130 Alzheimer’s clinical studies are currently taking place. Your physician may be unaware of all the research studies in your area. For the most up-to-date information about clinical trials in Alzheimer’s disease, visit Alzheimer’s Association TrialMatch®.

 

5 Minutes to Bring Us 5 Steps Closer to a Cure

Doctors examining x-rays

Doctors examining x-rays

This month during Alzheimer’s and Brain Awareness Month we are focusing especially on clinical trial participation since it is one of the really BIG ways that you can make a difference in this deadly disease.

Many people aren’t quite sure what clinical trials really are – perhaps images of scientists with test tubes come to mind. That can certainly be a part of it, but other clinical studies may be non-invasive (no needle sticks!) and may not require travel or hospital visits – some of them you can even do from home! CLICK HERE to read about one such example of a recent study that involves participants doing an old-fashioned pen and paper test on their own each year.

The great thing about TRIAL MATCH – the organization that the Alzheimer’s Association partners with, is that it is a lot less work for you to find out what you may be eligible for. So instead of having to fill out a separate profile for each research study that interests you, you fill out one profile on Trial Match and they let you know which studies around the country you may be eligible for! Easy peasy! It only takes about 5-10 minutes to complete online, which you can do right here:

http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp

So if you have 5 or 10 minutes to help END Alzheimer’s, and who doesn’t?, please know that it really does make a big impact.

 

What Can You Do About Alzheimer’s?

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A researcher demonstrates brain changes that occur with a diagnosis of dementia.

Every person who has loved someone with Alzheimer’s disease knows the toll the disease takes on the person living with the disease and the family. But, there IS hope. Our nation eradicated polio, we’ve invested in research for AIDS, heart disease and cancer and we’ve seen great returns. There are now survivors for each of these diseases and people with these conditions can live well and enjoy life thanks to the advances made and treatments available.

If we are going to see effective treatments that do more than delay nursing home placement and can help provide for a good quality of life after a diagnosis of dementia, or even better find ways to prevent the disease, we have to step up our support of Alzheimer’s research.

The Alzheimer’s Association diligently lobbies congress for increased funding of research and Congress now appropriates about $586 million per year for Alzheimer’s and related dementias research. The Alzheimer’s Association also raises funds to support research world-wide, making the Association the third largest funder of research world-wide, only behind the National Institute of Health and China.

Funding is one of the two most significant unmet needs for furthering Alzheimer’s research. The second unmet need is for volunteers to participate in clinical trials. The requirements for participants are minimal compared to the results that will create a future with effective treatments or preventative measures.

June is Alzheimer’s and Brain Awareness Month and an ideal time for individuals to make a commitment to help eradicate Alzheimer’s. An easy way to do this is to get enrolled in clinical trials by signing up for TrialMatch, a program of the Alzheimer’s Association. Signing up is easy, just visit www.alz.org/TrialMatch. The program allows individuals to register on-line and be matched with trials in the area where the participant lives. Healthy individuals as well as persons with early stage dementia are needed for the trials.

People who participate in clinical trials tell us they do it because it gives them the opportunity to do something about Alzheimer’s and they feel it is an honor to play a role in finding a cure. Age continues to be the biggest risk factor for getting Alzheimer’s and we all are aging. We need our brains. Help celebrate Alzheimer’s and Brain Awareness Month by participating in a clinical trial near you.

Ginny Helms is the Vice President of Chapter Services & Public Policy at the Alzheimer’s Association, Georgia Chapter

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June is Alzheimer’s & Brain Awareness Month!

purplepledge

 

Have you heard?June is Alzheimer’s &Brain Awareness Month. The Alzheimer’s Association is asking people across the world to take the Purple Pledge and join the international conversation about Alzheimer’s disease. Everyone who has a brain is at risk to develop Alzheimer’s, the only leading cause of death that cannot be prevented, cured or even slowed.

Take the Purple Pledge today at alz.org/alzpledge and do one or more of the following:

  • Wear purple throughout the month and especially on Sunday, June 21 – The Longest Day
  • Ask friends and family to take the pledge and join the cause.
  • Turn your Facebook profile picture purple
  • Sign up to be an advocate
  • Donate to advance Alzheimer’s care, support and research.

You’ll hear more soon from our VP of Programs, Ginny Helms, about what she’s doing this month to keep her brain healthy and we’d love to hear your ideas too!

An estimated 47 million people worldwide are living with Alzheimer’s or another dementia. You can help. Visit alz.or/alzpledge to get started.

Big Bang Theory cast

The case of TV’s The Big Bang Theory goes purple for Alzheimer’s Awareness

 

Giving Care

I recently hosted two of my nieces, both with young babies.  While I marveled at what fine young women these two have become, I was also impressed with their mothering.  It’s a wonder to watch their patient, loving care of these very dependent little humans.  The countless interruptions, loss of sleep, and simply arranging one’s life to revolve around the needs of another . . . all with a cheerful acceptance that this is what’s required to make happy, healthy people.

This got me to thinking about the whole idea of giving care across life’s spectrum.  How we are called upon to provide care for another, sometimes temporarily, and sometimes for very long periods.

My nieces are young, with seemingly boundless energy to meet the demands of motherhood.  (Though, I noted that both fantasize about being able to just sleep!)  Their mothering is about love and joy.  They know that their babies will soon enough be sturdy young people who require less of them, at least in the physical sense.

Caring for a person with dementia is, of course, a very different kind of care.  I am privileged to facilitate a telephone support group for such caregivers, the Caring Connection, twice a month.  Caregivers who might find it difficult to attend a traditional, face-to-face support group can connect with each other via phone.  And, I marvel at them.  They are all well past the ages of my nieces, many of them great grandparents at this stage of their lives.  They, too, have been called upon to give care.  They, too, must respond to countless interruptions; often go without sleep; and have arranged their lives to revolve around the needs of another.    But, the people they care for are continuing to decline and will need more and more from their caregivers, not less.

Our conversations on the Caring Connection are wide-ranging.  People are encouraged to share their honest feelings.  I loved it that one caregiver felt comfortable enough to say, “I called to complain tonight!”  She went on to relate that she had had a particularly difficult day with her loved one; she simply needed to vent.  She was in the right place.  Others quickly related to her feelings, which were familiar to all.  I was deeply touched when one caregiver talked about her realization, in the midst of feeling overwhelmed herself, that her loved one was frightened and overwhelmed as well.  Another caregiver talked about how she feels it’s a gift to be able to care for her wonderful mother, even with the challenges involved.  They all share resources that have helped and the things that keep them going.  Many talk about their faith.  And, they remind each other that it’s important to have breaks; to be able to laugh; and to have some fun.

Those who give care are not in the spotlight.  Too often they simply fade into the background of our busy days.   We don’t see them quietly holding the world together.  So, today, let’s lift them up into the place of honor that they so richly deserve.

Susan with her great nieces!

Susan with her great nieces!

Susan Formby is a Care Consultant at the Atlanta office of the Alzheimer’s Association Georgia Chapter.

Framing a Masterpiece

In 2002 while serving as the Executive Director of a Nursing Home in Tennessee, I was asked by our Regional Vice President to add some decorative art to the hallways of this 203-bed nursing home.

In response, I asked our Activities Director to initiate a painting class for the residents. She was reluctant at first, but I assured her that I would purchase the canvases, paint, brushes, frames, and other needed supplies. The paint would be acrylic, so it was not terribly messy and was not toxic.  She agreed and began the art class, starting with our most alert and oriented residents who created some great works of art. All of the resident paintings were signed, dated, framed and hung to brighten our halls.

Shortly after, one of the Activity Assistants decided to try the painting class in our Special Care Unit with residents diagnosed with Alzheimer’s disease or a related dementia.  On her first attempt at this activity, she had a few residents painting and was elated that we had found something new for them to do.  One resident, *Ronald Jones, who was in the later stages of Alzheimer’s disease, was not able understand how to grasp the paint brush, dip it into paint and apply the paint to the canvas.  After working with him for quite a while, the Activities Assistant had a great idea.  She placed latex gloves on Mr. Jones’ hands and showed him how to rub his hands in the paint and then onto the canvas.  He was then able to complete the painting you see here:

Ronald Jones

 

It was framed and I shared with the other staff this Activity Assistant’s brilliant idea of having Mr. Jones don gloves so he could participate.  The staff became energized and began to try different ways to encourage other residents to paint.  We continued to hand the resident paintings in the halls and family members and visitors loved seeing the work of their loved ones and friends.  I made such a big deal of Mr. Jones painting that it was hung in my office for the duration of my time there.  As I prepared to leave this job for my next assignment, I returned the painting to our Activities Director.  At the farewell event in my honor that painting was given to me at the request of Mr. Jones’ wife,  and it now hangs in my office in the Columbus, GA regional office of the Alzheimer’s Association, Georgia Chapter.

That painting was the impetus for more residents and staff members to become involved in the art classes. It has always meant a great deal to me and regularly I receive comments from visitors in my office and I tell the story of Mr. Jones and the lesson we learned from his painting.  This summer, the Alzheimer’s Association plans to begin collaboration with the Columbus Museum in hopes of having more masterpieces created by persons with Alzheimer’s disease or a related dementia.  For me, the legacy of *Ronald Jones will continue.

 

David Marlowe is the Program Director at the Columbus Regional Office of the Alzheimer’s Association, Georgia Chapter. 

*Names have been changed to protect the privacy of individuals