The Good, The Bad & The Ugly of Alzheimer’s – and The Need for More Rapid Referrals

When you think of progress being made on the front of referring Coloradans for education, care and treatment for Alzheimer’s disease and other forms of dementia, you might be reminded of the Clint Eastwood classic, “The Good, the Bad and the Ugly.”

The good news is that the Alzheimer’s Association is actively and aggressively working on behalf of families affected by dementia, providing education and programs – all at no charge to the families – and funding research to find a cure for the disease.

The bad news is that there still is no prevention for Alzheimer’s. No effective treatment. No cure. And the trend line for the disease is alarming: rising 37 percent between now and 2025 to more than 92,000 people living with Alzheimer’s – far more people than seats in the Denver Broncos’ Mile High Stadium.

The ugly news is half of all people with Alzheimer’s and other forms of dementia are never diagnosed. And of those who are, too many are never told they have Alzheimer’s and are never referred to our Association by their physician for the care and support that would make their journey easier to manage.

Why is a diagnosis important? Without it, the individual and his or her family may never understand the cause behind the person’s changing behavior…their declining memory…their inability to complete simple tasks that once were taken for granted.

Without a diagnosis, the person will never get the chance to enroll in important medical trials being conducted across the country to find that elusive cure, and to have the opportunity to try new drugs that are in the experimental stages.

Without a diagnosis, caregivers may never learn of valuable services, such as support groups, programs for persons in early, middle and late stages of the disease; as well as classes that teach skills for better communication with a person with dementia, in addition to legal and financial planning workshops.

is6116So, why are many of those with Alzheimer’s diagnosed but never told? Why aren’t more providers taking advantage of the Rapid Referral program that directs individuals to the Alzheimer’s Association for education on the disease and options that are available?

“Alzheimer’s is a difficult subject matter to address with any individual who is facing that diagnosis,” said Kay Adams, social worker and clinician at the Kaiser Permanente Memory Clinic. “It’s not a short discussion. A primary care physician may not have the time or expertise to talk about it in a supportive way. And if the diagnosis is merely memory loss or cognitive disorder, it isn’t enough to trigger support services. We can’t refer a person to the Alzheimer’s Association for education and support without a proper diagnosis.”

Both Kaiser Permanente and the University of Colorado Hospital’s Outpatient Seniors Clinic are among the medical groups that have been leaders in advocating for greater use of Rapid Referral to get their patients into services provided by the Alzheimer’s Association. It’s a good place to start.

“Our relationship with the Alzheimer’s Association is unique in that once the patient and family agree, the Association reaches out to them and not the other way around,” said Elvin (Tedd) Perry, RN and coordinator for the University of Colorado Seniors Clinic’s Dementia Program. “It is a great introduction to, or continuation of, managing our patients’ care. The point is to support our patients.”

The progress being made by Kaiser Permanente, University of Colorado Seniors Clinic and other medical groups across the state is encouraging as we look to serve all individuals and families dealing with Alzheimer’s and other forms of dementia. Now, our goal is to encourage every provider to see the benefits of making a Rapid Referral and give those people the benefit of the programs and services available to them – all at no charge – that can make such an important difference in their lives.

If you have a question about Alzheimer’s Association services, call the 24/7 Helpline at 800-272-3900. If you are a health care professional, call Theresa Grill, Alzheimer’s Association of Colorado professional education coordinator, at (303) 813-1669, to get the Rapid Referral program in your health system.

Protecting Dad: Watching out for the Caregiver as Mom Deals with Dementia

Sirena Rodriguez has watched her mom, Mary Martinez, change over the past six-plus years under the weight of Pick’s disease, a form of dementia that causes personality and emotional changes as well as aphasia, which is a loss of the ability to understand or express speech.

While Sirena knows there is no remedy for her mom, she is equally focused on her 81-year-old dad, Paul, who is struggling under the weight of his responsibility as caregiver.

“It’s tough for my dad,” said Sirena. “He didn’t want to send her (Mary) away to a care facility. His three daughters pushed him when we saw that he couldn’t help mom the way she needed.

Sirena sees the irony in her parents’ situation. Her dad remains very sharp intellectually, but the toll of caregiving has left him in fragile physical health. In contrast, her 79-year-old mom is doing very well physically but can no longer communicate with family. In fact, she no longer recognizes her husband or daughters, and is unable to express her own needs or sensation of pain.sirena-rodriguez

“My dad is very lonely without mom,” said Sirena. “He misses her companionship and feels guilty for not continuing to care for her at home, but now that she’s in a care facility, at least he doesn’t have the day-to-day stress.”

The family’s experience with dementia is not limited to one individual. Mother Mary’s sister, Sally, is living with Alzheimer’s, although her communication skills remain strong.

“My mom can only communicate through facial expression,” said Sirena, “She doesn’t recognize emotion, but she always enjoyed fashion and she still checks out my outfits.”

The experiences Sirena and her sisters have had in caring for both of their parents have led them to become active participants in the Alzheimer’s Association of Colorado’s annual Walk to End Alzheimer’s, which raises funds to support programs and services offered at no charge to the public, as well as research for a cure.

She also has participated in a support group through the Association, and hopes to repeat the process with her entire family. And the sisters have learned several valuable lessons that they hope other families can learn from as they deal with dementia in a loved one:

  • Become knowledgeable about healthcare options for loved ones. Sirena’s family benefited from respite care in her parents’ home.
  • Explore financial and legal planning to ensure that family members are not caught by surprise in the challenges of arranging care and legal transitions.
    • Click here to learn about care options as well as financial/legal planning at the Alzheimer’s Association’s Community Resource Finder.
  • Become familiar with Medicare and what it will and will not cover, since the cost of long-term care can be quite high.
  • Explore support groups. To learn more about Alzheimer’s Association of Colorado support groups, click here. Also, call the Association’s 24/7 Helpline at 800-272-3900 with any questions about resources for caregivers Alzheimer’s disease or dementia.

How to Get the Most Out of a Support Group

By Deb Wells, Volunteer and Statistics Coordinator, Alzheimer’s Association of Colorado

To learn more about support groups offered through the Alzheimer’s Association of Colorado, click here, email Heather Kanapackis at hkanapackis@alz.org or call 303-813-1669.

Okay, I admit it. I was a support group junkie! When your loved one, at age 58, is diagnosed with a mysterious (to us) terminal, dementing illness, more information is better – and offers a bit of an emotional outlet. I attended three main support groups. Each had a different impact on me and my husband, as well as how we moved through the “journey” of Lewy Body Dementia.

Our first encounter with a support group came about six weeks after his diagnosis. I was desperate to find a place where John could connect with someone else going through the same thing. He was a different kind of male – quite unguarded, inclined to share his feelings, and open to learning from others. He so needed to talk with someone else who was in his situation. I reached out to the Alzheimer’s Association and learned there was a support group that met just a mile or so from us. I contacted the name on the listing and explained that I wanted my husband to meet others who were recently diagnosed. She arranged to have one of the other caregivers in the group bring her husband so John could chat with him.* We arrived and all was going as expected. Prior to the official start of the meeting John and his new compadre compared notes and had a nice chat.  (*There are currently Alzheimer’s Association Early Stage support groups and social engagement activities that address the connection I was striving for with John.)

A Unique, But Scary Meeting

care-and-supportThen the meeting began with each person describing their current status: anything new, any questions or concerns. Other group members chimed in with their thoughts on situations or issues. Another new group member began by describing his wife’s illness. She had had a stroke, which was followed by a decline in cognitive abilities, along with new paranoia and violent tendencies. She was awake all night, suffering from delusions and acting out in new and surprising ways. He described a situation where he awoke and she wasn’t in bed. He went from room to room searching for her to no avail. As he moved into the bathroom, she leaped from behind the slightly closed door with a butcher knife in her hand, poised to attack him! He was able to get the weapon from her and calm her down, but not without great effort.

John and I both were affected by this story! I had no idea that dementia could manifest in this type of behavior, and John internalized the details so much that he talked about it for months afterward. He apologized repeatedly for anything he might do in the course of the disease. After learning more about symptoms and behaviors, I reassured him that this was a very rare situation, and that he might never display anything close to this type of behavior. As it turned out, in John’s 12 years of dealing with his illness, his behavior was just the opposite. He was kind, cooperative, collaborative and very appreciative of my care. Perhaps this incident imprinted on him in some way.

So, what did I learn from this episode? After attending more groups with this facilitator, it was clear that what we heard in that first meeting was an anomaly. In fact, I was associated with that group for 14 years (eventually as co-facilitator) and never heard another situation quite like that one. That extreme description of behavior could have put me off from ever attending another support group. Fortunately, the next day the facilitator called me to chat about the meeting, and assured me this was not the norm. Thankfully, I kept attending and learned more than I could have ever expected. Everyone’s situation was unique. I took the approach that I could learn something from every story. Some folks talked about caregiving needs and asked about resources that I could also immediately put into place. Others talked about their loved ones being placed in a care community (“would we ever need to do that?”). It was as if I was in an “Alzheimer’s 101” course and an advanced graduate seminar at the same time. Apply what is needed today and tuck away the nuggets of experience you’ll need for later on, I decided.

Early Onset Caregivers

A few years later a new type of group was introduced at the Alzheimer’s Association: Early Onset couples were screened and invited to begin attending a monthly meeting in the evening at the Association offices. The large group of caregivers and people with the diagnosis would initially meet in one group and go through introductions and receive updates on classes, events, etc. Then the caregivers and those diagnosed would separate to adjacent rooms for their support group meetings.**

(**This format has now been replaced by more targeted Early Stage support groups, followed by structured social engagement opportunities.)

Often we would hear peals of laughter coming from the next room – and sometimes from ours, as well! Groups help “normalize” those situations that we think are totally unique. I found great comfort in knowing that I’d have a bunch of eager listeners to my latest tale of absurdity, as did my peers.

John also got a great deal out of the group. He formed friendships with some of the others with a diagnosis. Most of the time the caregiver group was comprised mostly of women, probably due to their desire to reach out for resources for care, and a tendency toward “joining.”

I learned that we all needed to be attentive to everyone in the group. This format, unlike my first experience, was free-form. Participants shared randomly, rather than going person to person. As we neared the end of one of our meetings, the quietest person in the group that evening erupted in tears and was visibly distraught. We then decided that we should begin the meeting by asking if anyone had an urgent situation that needed to be discussed immediately.

Of course, over time people came and went. But there was a core group who bonded and formed great friendships. Some traveled together – so convenient to have a male caregiver with another caregiver’s husband who had the disease in situations like restroom visits, and likewise with the women. Many were at the ready if someone needed a substitute caregiver due to an appointment or after surgery. In my hubby’s final days in a residential assisted living home, five or six of my group members stopped by to be with me at such a tough time.

Lewy Body Support Group

The third group we attended was a Lewy Body Dementia support group. The Mayo Clinic confirmed my thoughts that John probably had this type of dementia, which has unique symptoms that really hit the mark for John. A new group was being formed in northern Colorado, and we were one of the first couples to join.

Caregivers and people diagnosed with Lewy Body Dementia were both included. Initially, it was planned that we would meet in separate rooms, but as the meetings progressed it seemed that everyone was comfortable with caregivers and those with a diagnosis meeting together. That didn’t stymie the conversation a bit. Over the years we talked about everything and anything – death, autopsies, driving, relationships…

A great deal of respect was shown among the participants, many of whom were early onset. We learned many new aspects of John’s probable future situation, including physical limitations from Parkinsonian symptoms.

As time went on, and complicated by a steep cognitive decline following surgery (although all precautions were made to avoid sedating substances), John ended up in a wheelchair. I left my career and spent many hours a day at the rehab facility. In fact, his decline was so severe, he was on hospice for a short time. Eventually, we turned things around and he looked forward to getting out to the support groups.

So, my key learnings about support groups are:

  • If you attend one and don’t like it, try again. Try the same group the next month, or try another group.
  • You’ll be asked to share to your comfort level. You won’t need to “be prepared.” This meeting is for you.
  • Feel free to ask direct questions — if you need information, this is an opportunity to get the benefit of others’ experiences and resource ideas.
  • If possible, include the person you’re caring for. It was one of the positive things in dealing with this disease for my loved one.
  • It’s OK to laugh! You’ll find your unusual story will prompt the sharing of others, and this makes everyone more comfortable.

To learn more about support groups offered through the Alzheimer’s Association of Colorado, click here, email Heather Kanapackis at hkanapackis@alz.org or call 303-813-1669.

An Alzheimer’s Caregiver Looks Back at Her Journey

Cyndy Noel didn’t know what she was in for when her husband Ron’s memory issues first started to manifest themselves around 2006. Within two years, Ron’s changing behaviors could no longer be ignored, and while his Alzheimer’s had not yet been diagnosed, Cyndy was already reluctantly assuming the role of caregiver.

“I call those the ‘years of the b#@!*,’” the Colorado Springs resident said as she reflected on the challenges of dealing with a loved one whose memory and behaviors change uncharacteristically, without understanding the underlying reasons. “I would say things like ‘how hard is it to run the vacuum cleaner?’”

cyndy-noel-preferredToday, six months after her husband passed away, Cyndy has a deeper appreciation for and understanding of the challenges – both to the caregiver and person with the disease – that Alzheimer’s poses. And if she has one key learning from the 10-year process, it is to not wait. Speak up and seek help.

“Alzheimer’s has a bad name,” Cyndy said. “People don’t want to talk about it. I didn’t.”

Ron had been a dentist who went back to school after retirement and became a part-time counselor. He was also a poet and blossoming artist. Yet Cyndy eventually saw the need to take charge and pushed for clarification regarding the changes in her husband’s behavior, then began exploring the options that were available to help her navigate the journey.

“The reality is that you don’t get it [Alzheimer’s] until you’re there,” she said. “Even many medical professionals don’t understand it.”

One day, after hearing her continuously complain about Ron, a coworker gave Cyndy a brochure from the Alzheimer’s Association, and the message clicked. She called that day, which eventually led to a meeting with a specialist and a diagnosis. And it sparked a relationship with the Alzheimer’s Association that continues after Ron’s passing.

In addition to the guidance on legal and caregiving steps, the Noels’ got involved in classes and workshops that brought them into contact with their “tribe,” people with shared experiences who Cyndy notes will “probably be friends for life.”

“Alzheimer’s is so complicated,” she said. “The ones who really get it are the ones going through it. We need each other. We can be a team. You can’t be afraid to reach out and connect.”

Those connections are as important – if not more important – for the caregiver as they are for the person with the diagnosis. Some people don’t make those connections and fail to adjust.

“You have to adapt to a new paradigm,” Cyndy said. “Sometimes there’s anger. Sometimes there’s guilt. There is a need for empathy,” which she noted is most likely to come from other caregivers.

Cyndy’s advice to people who find themselves embarking on the Alzheimer’s journey is to take a thorough and deliberate approach to getting a medical opinion, take charge of the situation in a respectful and considerate manner, get involved and learn as much as you can.

“Often doctors are in a rush to render an opinion and move onto the next case,” she said. “If you are the caregiver, encourage the doctor to engage with the family, because the individual with memory issues will be in denial. People can have the ability to ‘look great’ and fake it for a period of time, but that window gets smaller and smaller. Family members can explain how the person has changed.”

While her husband has recently passed away, Cyndy is by no means done with the Alzheimer’s Association. In addition to writing on the subject for area publications, she participates in the Colorado Springs Walk to End Alzheimer’s. Proceeds from the Walk go to support educational programs and services in the Colorado Springs area, as well as national research to find a cure for Alzheimer’s.

“My journey with Ron has been one of the most valuable experiences of my life,” she said. “I’ve changed and have become more confident in being with uncertainty, as well as more compassionate for myself and others. I’m grateful for that.”

To learn more about support groups for caregivers or other services of the Alzheimer’s Association of Colorado, go to www.alz.org.co or call the 24/7 Helpline at 800-272-3900.

The Hardest Thing I’ve Ever Done – An Alzheimer’s Caregiver on His Toughest Choice

Ken Carter was just old enough to enlist in the Navy toward the end of World War II. At 18, he was among the soldiers who journeyed to small islands in the Pacific to root out the last Japanese soldiers who refused to surrender, receiving a bayonet wound to the stomach in the process.

Yet when Ken talks about the hardest things he’s ever done, he doesn’t reflect on his war wounds. He talks about the decision earlier this year to move his wife, Verna, who had been diagnosed with Alzheimer’s three years earlier, to a long-term care facility to give her the around-the-clock care she needed.

Ken and Verna Carter would go dancing seven nights a week for years after they married in 1973, staying out until after midnight before he would rise for work at 6 a.m. They worked together in a ceramics business on weekends and loved to travel.

Eventually, Verna’s arthritis and macular degeneration robbed them of those pleasures, and other signs of aging intruded on their life. After 40 years of marriage, Ken knew his wife well, so when changes in her short-term memory as well as her personality became too obvious to ignore, “I knew something was wrong,” says Ken. “She did too.” A visit to the doctor confirmed the Alzheimer’s diagnosis.

Just as serving in the Navy was a duty that Ken never questioned, he didn’t think twice about taking on the role of caretaker for his wife. Even though at age 92 she was confined to a wheelchair and nearly blind, Ken – then 86 – never considered any other option but to care for Verna at home.

For all but the last three months of his wife’s battle with Alzheimer’s, Ken watched over Verna in their one-bedroom apartment in Pueblo. He did get support from their daughter, Deborah, but her own family obligations kept her busy much of the time, so Ken soldiered on.

Ken’s closest companion during his final three years of caregiving was the Alzheimer’s Association office in Pueblo, where Regional Director Ann Carter – no relation – provided one-on-one counsel, enrolled Ken in classes and directed him to support groups she thought would help. She even met with Verna to give her reassurance that the Association would be useful for Ken.

“Ken worked to get educated on Alzheimer’s,” said Ann Carter. “Many people get overwhelmed when they hear the Alzheimer’s diagnosis, but Ken had a plan.”

Even though he was in his mid-80s himself, Ken was determined to provide Verna with the best of care. Some of it involved managing his schedule: cooking on weekends and freezing meals so that he’d have uninterrupted time to spend with Verna the rest of the week.

A bigger challenge was dealing with the personality changes, such as when his loving wife of four decades would tell him “I don’t like you anymore” and talk about divorcing him or suicide.

A valuable lesson

Perhaps the most valuable lesson that Ken learned from his time in the Alzheimer’s Association support groups was to stop trying to be right when he and Verna would disagree. The couple would have fierce arguments and the couple “went through hell” for a while, but finally Ken realized that “it wasn’t working to convince her” of the difference between reality and delusion. Since she was seeing life through a lens of dementia, they would never agree.

“I had never lied to her in my life, but I sure had to learn,” he said. Joining in her reality and giving up the need to be right came in very handy when Verna began showing signs of anxiety, which would sometimes manifest itself in hallucinations.

“Some nights, she thought there was a man wallpapering in our bedroom,” Ken said. “It wasn’t working to explain that there was no one there, so I’d just get up and holler at the guy to leave. One night, there were 13 people in our room…not really, but in her mind there were…” so Ken’s job was to get them out. Ken lost a lot of sleep in those periods, but he got the job done, and Verna took comfort from knowing that he was taking care of her.

Taking a special trip

As challenging as many days were, Ken is quick to say that the couple shared many special moments even late into her diagnosis. He recalls her request in their last year together to pay a visit to his hometown in Kansas – an 11-hour drive away – to visit the cemetery where Ken’s parents and other family members were buried. The last time the couple had been there was 43 years earlier, the year they were married. But it was important to Verna, so Ken was determined to make it happen.

“I told her that if we were going to make the trip, we would need to build in a lot of rest stops along the way, and she agreed,” Ken said. So the 88-year-old World War II veteran and his blind, wheelchair-bound 94-year-old wife, took their last vacation together – against the advice of their daughter – and had a great time. “She said she wanted to go, and I told Verna I would take her,” he said emphatically.

Not long before his wife passed away on April 27, 2016, Ken realized that he could no longer care for her. Her habit of getting out of bed in the middle of the night led to frequent falls. And one hair-raising experience while Ken was in the bathroom saw Verna escape from their apartment, ride the elevator to the ground floor and blindly maneuver her wheelchair away from their building before her husband could find her.

Care for the caregiver

Those experiences, and the fact that the toll on Ken was reducing him to an unhealthy weight he had not seen since high school, helped him realize that it would be better for both him and his wife if she could get professional care.

“You (the caregiver) must take care of yourself,” Ken said. “Taking care of her around the clock got me worn down. When that happens, you can no longer care for the person with Alzheimer’s.”

Ken’s devotion to Verna didn’t lessen when she moved into the Memory Care Unit. To reassure her that life had not changed, he’d join her at 6 a.m. and stay until the evening every day. They would listen to some of their favorite dancing tunes and talk about her early childhood memories. And, to the end, while her recent memories faded, she always recognized Ken and looked forward to his visits.

Sharing his experience

ken-carter-1-pueblo-ann-carterVerna has been gone for six months, but Ken remains committed to the Alzheimer’s Association and his friend, Ann Carter. He still comes to support groups and, when asked, offers his perspective to other caregivers on the lessons he learned in his years of caring for his wife.

“Some people, when a loved one passes away, they need to close the book and move on,” said Ann. “Ken asked if he could still come to our meetings and say ‘here’s what worked for me.’ Even though he experienced his share of tough times, he always puts as much of a positive spin on things as possible. He emphasizes that caregivers and persons with dementia can still have good times and good days.”

And Ken is a valuable role model for other caregivers. He is a survivor.

“When Ken’s here, other caregivers hear how he learned to cope and see that he made it,” said Ann. “He survived, and he will talk and laugh about some of the fun times he had with Verna. It was never all doom and gloom for Ken.”

To learn more about the Alzheimer’s Association of Colorado, go to www.alz.org/co or call the Association’s 24-hour Helpline at 800-272-3900.

 

Support for Increased Research is the Path to Answers for Alzheimer’s

By Diana DeGette

congresswoman-photo-dld-high-res-5x7_1
Congresswoman Dianna DeGette

Chances are that you or someone you know has recently walked into a room on an errand and forgotten what it was, or maybe blanked on a new acquaintance’s name, or mislaid an important item and hunted around for it, perplexed.

People of all ages who are under stress, in a rush or in unfamiliar environments face these little lapses all the time. They are also part of the normal aging process. Normally, we can laugh them off.

But these lapses are no laughing matter for those at risk of developing Alzheimer’s disease. They may be harbingers of far worse to come: serious memory loss, confusion, mood and behavior changes, deepening disorientation and difficulty speaking, walking and even swallowing. People who struggle with Alzheimer’s or who care for someone who has the disease know that it’s simply devastating.

Alzheimer’s is the only disease among the top 10 causes of death in the United States that can’t be prevented or cured. One in nine Americans age 65 and up has Alzheimer’s. Every 66 seconds, another person in this country develops it – and it will be every 33 seconds by the middle of this century, barring the development of medical breakthroughs to prevent, cure or mitigate the disease.

In Colorado alone, the number of people with Alzheimer’s could rise from the current estimated 67,000 to 92,000 by 2025 – an increase of more than one-third.

But it doesn’t have to be that way. Today there is a worldwide effort to find better ways to treat Alzheimer’s, delay its onset and prevent it altogether. And much of this work is being done in the United States.

Congressman Fred Upton (R-MI) and I are the authors of a major, bipartisan bill called the 21st Century Cures Act (H.R. 6) that modernizes how the federal government does medical research, provides more funding and eases regulatory burdens to allow new discoveries in the treatment of Alzheimer’s and other diseases.

One part of this bill also increases funding for the National Institutes of Health, including a substantial new innovation fund. I have long supported a robust NIH budget and am eager to see it boosted again through the annual appropriations process but, regardless of how that turns out this year, a special innovation fund at NIH would go a long way toward spurring research breakthroughs.

I’m also a cosponsor of the HOPE for Alzheimer’s Act (H.R. 1559), which provides Medicare coverage for diagnosis and critical services to improve the lives of Americans with Alzheimer’s.

Some might argue that the funds are better spent on some of our country’s other pressing needs, but without more advances in prevention and treatment, the demand for Alzheimer’s care will only become more costly. Already, over the next 20 years, caring for people with the disease will cost the nation $20 trillion, with 60 percent of that borne by Medicare and Medicaid. And, of course, that doesn’t begin to count the personal toll that the disease takes on all who are affected, persons with the diagnosis and caregivers alike.

When you consider that 90 percent of what medical science now knows about Alzheimer’s has been discovered in the last 15 years thanks to accelerated research, just think of what we could do with more substantial support. Better understanding will lead to new treatments, improved care and, eventually, a cure.

Then, maybe one day in the future, Alzheimer’s itself will be all but forgotten.

Diana DeGette, who represents Colorado’s First District to Congress, has been deeply engaged in health care policy matters throughout her professional life.  She is a senior member of the House Energy and Commerce Committee and ranking member of its Subcommittee on Oversight and Investigations.


Become an Alzheimer’s Advocate today!

Members of the Alzheimer’s community are making their voices heard on Capitol Hill and in statehouses around the country about issues that affect people with Alzheimer’s and their families and caregivers. Add your voice to theirs by becoming an advocate for these issues. We’ll provide you with information about Alzheimer’s-related legislation, your elected officials, and tips on how to communicate with them effectively. All you need is a desire to help and a willingness to take action.take-action-button-flat

6 Reasons to Not Delay Asking Questions About Alzheimer’s

President Ronald Reagan understood the significant risks of Alzheimer’s disease when he designated November as Alzheimer’s Disease Awareness & Family Caregivers Month in 1983. Sadly, he passed away from the disease in 2004.

The prospect of being diagnosed with Alzheimer’s disease is a daunting one. It is the sixth-leading killer of Americans, ahead of breast and prostate cancers combined. And it’s the only leading disease with no prevention, no treatment and no cure.

Alzheimer’s is intimidating – and for good reason. It gradually robs people of their memories and ability to function, eventually leading to a shutdown of the individual’s body.

However, because of the wide-ranging impacts it can have on the individual as well as loved ones and caregivers, there are many reasons not to ignore the 10 Warning Signs of Alzheimer’s.

Following are six of the most important reasons why you should seek an early diagnosis in the event that you are seeing yourself or a loved one displaying the warning signs of Alzheimer’s disease:

  1. Ruling out treatable – and possibly reversible – causes of dementia. Alzheimer’s is not the only potential cause of the memory loss and other symptoms often associated with the disease. Vitamin deficiencies, thyroid issues and delirium are among the other medical conditions that could be at fault.
  2. Diet and exercise. While any doctor will tell you that diet and exercise are keys to ensuring long-term physical health, it is equally important to prolonged cognitive health. In fact, there is research that shows that even after an Alzheimer’s diagnosis, diet and exercise can be as effective as current medications in prolonging the physical and mental health of individuals.
  3. More benefits from medication. While no proven cure for Alzheimer’s has been found yet, there are FDA-approved medications that have been shown to be effective in slowing the disease’s progression and maintaining the person’s cognitive processes, particularly when the medications are used in the disease’s early stages.
  4. Time to plan.  Until a cure is found for Alzheimer’s, one benefit of an early diagnosis is that it provides both the individual and loved ones additional time to plan and make important decisions regarding care and treatment, legal decisions and more.
  5. Preparing the caregiver. Often overlooked in the progression of Alzheimer’s are the caregivers – those who make personal sacrifices, both in their time and resources – to care for their loved ones. Understanding the changes that Alzheimer’s brings to the physical and mental wellbeing of the individual will help caregivers prepare as well as realize when the challenge is too large for them to take on as an individual.
  6. The many programs and services of the Alzheimer’s Association. One of the biggest benefits that people cite when they finally call the Alzheimer’s Association is that they are not alone. In Colorado, there are 67,000 people living with an Alzheimer’s diagnosis – a total that will jump to 92,000 by 2025. Those who call the Association’s Helpline (1-800-272-3900) are given access to a wide range of information, programs and services at no charge, from support groups and research programs referrals to information about care options and a range of programs for persons with early stage Alzheimer’s.

To learn more about Alzheimer’s disease and services available through the Alzheimer’s Association of Colorado, call (303) 813-1669, go to www.alz.org/co or call the 24-hour Helpline at 800-272-3900.

Why Isn’t Every Major Corporation Enlisting in the Fight Against Alzheimer’s?

imageBy Kathy Seidel, former managing director/president, The Northern Trust Company, Colorado

Almost every year, someone will ask me why a financial services firm like Northern Trust is committed to supporting the Alzheimer’s Association.

There are a number of reasons. The first is simply my personal passion for the organization and the mission. It has been such a pleasure to work with Linda (Mitchell) and all of the staff in the Denver office for so many years. I know this is a very well run organization.

Also, at Northern Trust, we work very closely with our clients and their families, many of whom have been impacted by dementia. We have seen the emotional and physical toll on family members and caretakers as well as the economic impact.

In regard to the economic impact, I want to share some sobering statistics:

  • About 16 million Americans will develop Alzheimer’s between now and mid-century. The cost of caring for them will consume 33 percent of Medicare spending by 2050, which could bankrupt the system.
  • Last year, nearly 16 million caregivers provided more than 18 billion hours of unpaid care having an economic value of $221 billion.
  • Family caregivers often spend more than $5,000 a year to care for a person with Alzheimer’s. For some, that has little economic impact but, for many, it may mean less food or other necessities.
  • In 2016, the cost of Alzheimer’s to the nation is $236 billion. By 2050, the cost will be over $1.1 trillion.

That’s a lot of numbers to digest, but the economic impact to our social systems, to families and to companies, is huge. So it seems to me that we should not be asking why a financial services company is committed to the cause. Instead, we should be asking why ISN’T every major corporation knocking on the doors of its local Alzheimer’s chapter and asking “How can we help?”  It is in their own best interests to do so.

It is the support of donors that provides hope that that this disease can be slowed and ultimately cured.

The Alzheimer’s Association offers financial and legal planning services, along with many other caregiver resources.

Alzheimer’s Doesn’t Care – Thoughts of a 21-year-old Caregiver

Alzheimer’s is a selfish disease. It doesn’t ask if you’re ready. It doesn’t care if you have other plans. It takes and takes and takes. And, just when you think you’ve given all you have to give, it takes some more.

Alzheimer’s thrust itself into Mollie McCune’s life when she was only 17. Mollie had just finished her junior year at Golden High School and adjusting to the fact that her parents were going through a divorce. Little did she know that in addition to her parents’ marriage falling apart, her mom, Julie, was crumbling as well. At age 52, Julie was diagnosed with Alzheimer’s.

Within three years, the effects of the disease were telling on the whole family. Sister Katie, who’s seven years older than Mollie, was managing the family’s finances remotely from Boston. Mollie provided hands-on care, but it was soon evident that professional help was needed.

“Mom stopped driving about three years ago when we noticed some dangerous tendencies, such as not understanding certain traffic signals, or not staying in the correct lane when turning,” said Mollie. “We had to pay a lot for caregivers. She began having issues…forgetting to eat, how to use the medication dispenser, how to use the microwave…”

When the challenges of providing care became too daunting, the sisters with their father’s support sought outside help, which included the Alzheimer’s Association of Colorado. That connection led to a wealth of resources, from home care companies to support groups to the current focus of Mollie’s struggle with the disease: the Walk to End Alzheimer’s, which is the Association’s primary tool to raise funds for a cure.

“It’s so hard when you first get the diagnosis – when you learn what the future holds – that’s the time when you need support,” said Mollie. “That’s what the Walk’s all about. That’s a time when you’ve got your whole support network all in one place at one time.”

Three years ago, Mollie formed a team at the Denver Walk, “Julie Strong.” The first year it was just Mollie and her mom, but the team continues to grow, reaching 27 people in the third year.

Sadly, Mollie isn’t confident that Julie will be able to participate in the 2017 Walk, as the pace of the disease seems to be quickening.

Time for a change

21-year-old-caregiver-photo
Mollie McCune (right) with her mother, Julie, and sister, Katie.

At the end of 2015, right after enjoying a final Christmas holiday together under the same roof, Mollie and Katie moved their mom into an assisted living facility in Denver where she could get the around-the-clock care she needs as Mollie furthers her education at University of Colorado.

“It was a stressful blessing,” Mollie said of the move, but the time had come.

Alzheimer’s has even left its imprint on Mollie’s studies. She’s majoring in medical sociology, looking at how diseases like Alzheimer’s affect society.

Already, 67,000 Coloradoans are living with an Alzheimer’s diagnosis. By 2025, that will rise 37 percent to more than 92,000. The disease takes a heavier toll on women, African-Americans and Hispanics.

“As Alzheimer’s continues to expand, it has a big impact on so many people,” she said.

Despite the pain that Alzheimer’s has caused her family and regardless of the years it is stealing from her mother’s life, Mollie knows that others feel the loss as well. She acknowledges how hard the process has been on sister Katie, who had to manage from afar, and was shocked by her mother’s deterioration when she would travel back for visits.

“The holidays are hard,” Mollie said. “We’d get questions from people who hadn’t seen mom in a few months” who were taken aback by the changes.

And even though she’s with her mom regularly, Mollie still misses her.

“As she declines, it gets harder,” she said. “I miss spending time with my mom, even when she’s there. She has difficulty speaking, and she loved to talk. It’s a long-term grieving process. The person is still there, but they’re not who they used to be.”

The family continues to adjust

The McCune family continues to adapt to the cruel taskmaster that Alzheimer’s is. And each tries to make the best of a worsening situation. Julie, who was very active in her church before her diagnosis, still goes every Thursday to help feed the homeless. And she wrestles with the urge to get outside, since most of the persons with Alzheimer’s in her living facility tend to be in their 80s while she’s a relatively youthful 57.

Sister Katie, who recently moved back to Colorado, is happy to be back in closer proximity to her family, and Mollie looks for the positives, finding them where many others may see none.

“This (Alzheimer’s) has made me compassionate to other people’s struggles,” said Mollie. “It caused me to grow up quickly, and it made me understand that everybody is dealing with something. You never know what’s going on in another family. It’s also made me passionate about furthering research and finding treatments (for Alzheimer’s).”

Mollie also learned an important lesson about self-reliance:
it’s okay to ask for help.

“Don’t be afraid to reach out to others,” she said. “You think that no one will understand. The most important thing is admitting you’re overwhelmed. Whether it’s calling the Alzheimer’s Helpline (800-272-3900) or asking a family member to come for the day to take some of the burden off you.”

And, even in the darkest times, Mollie still draws inspiration from her mother.

“Mom has really given me something special,” Mollie said. “Even when she’s struggling, she’ll say ‘it will be okay because I’m strong.’”

Lessons from an Alzheimer’s Caregiver: You Don’t Want to Send Away Someone You’ve Loved for 57 Years

Joe Fabeck’s wife, Diane, hadn’t been sick in the 54 years the Colorado Springs couple was married. She never went to the doctor. So when she began showing the first symptoms of Alzheimer’s disease, he didn’t pay much attention.

“I thought she was teasing me,” said Fabeck. “She’d been having problems for a long time, but she wouldn’t admit it.

When a complete physical didn’t reveal any obvious reasons for Diane’s memory issues, Joe eventually brought her to visit a neuropsychologist, but Diane emerged without a diagnosis and that allowed her to continue to put up a brave front.

“Finally, one day I walked into our bedroom and found Diane crying on the bed,” said Joe. “’I’m going to be just like my mother,’” she told me.

Diane’s admission helped Joe begin to take steps to get help, both for her and for him.

When Diane was finally diagnosed with Alzheimer’s five years ago at age 70 after several years of memory-related symptoms, Joe was already two years into chemotherapy treatment for cancer. But he pressed on, serving as his wife’s caregiver. He alerted his neighbors in case she might wander. He would discretely hand out preprinted cards to people they would encounter to alert them to potential behavioral issues. And while she was still driving, he would follow her at a distance to ensure she was safe.

Even in the midst of the tragedy of Alzheimer’s they would find moments to laugh. One day she escaped from the house and took off in the car. Joe alerted the police and they located her and pulled her over. Diane thought it was a special occasion when the nice man in the sharp uniform and the fancy red and blue flashing lights came to see her.joe-fabeck

Connecting with Alzheimer’s professionals

Eventually, Joe connected with the Alzheimer’s Association of Colorado and became familiar with the programs and services that are offered at no charge to people with the Alzheimer’s diagnosis and their caregivers.

“People don’t understand how valuable these programs can be,” he said. “I have benefitted from these educational sessions. I’ve never come away without learning something new. But it’s not just the programs – it’s the interaction and the connections you make.”

The sense of community among families with Alzheimer’s – particularly among caregivers – is a powerful connection. No one understands or appreciates the challenges of being a caregiver for a person with Alzheimer’s like another caregiver.

“There’s no way to explain this experience to anybody unless you’ve lived through it,” he said. “Patience is a key. It’s hard not to get mad. There’s no predicting the behavior. You never know what’s going to happen next.”

While the behavior of the person with Alzheimer’s can be unpredictable, the reaction of family members often is too predictable.

“A friend said to me: ‘when my wife gets better…’” Joe said. “She’s not getting better. My challenge is accepting that the Diane I knew is gone. She’s not coming home – ever.”

Finding the right care

At first Joe tried to care for Diane himself, and he got assurances from friends and family that they would be there to help him.

“Friends and family are ready to help – until you ask,” he said. “They have jobs and they have kids and lives of their own to lead. You need professional help, like Barb Caudle (Colorado Springs regional director of the Alzheimer’s Association) and the people she can help you connect with.”

Eventually, Joe added in support from in-home caregivers, who would spend three to five hours at a time with Diane at their home.

“Paid caregivers are great when they’re there,” he said. “They’re there more for the caregiver than for the person with Alzheimer’s because it truly is a 24/7 job and you need a break.”

Recently, Joe reluctantly made the decision to place Diane in a memory care facility where she could receive around-the-clock care.

“You don’t want to send away someone you’ve known and loved for 57 years,” he said, but the toll on him was becoming undeniable. Joe had seen a recurrence of his cancer, and was in need of a third round of chemotherapy, but felt he couldn’t afford to take time away from caring for Diane to tend to himself.

He notes that two women from his caregiver support group – both younger than this spry 82-year-old former chief operating officer who bought and ran two Colorado Springs restaurants after his “retirement” – recently suffered heart attacks from the stress of their caregiving responsibilities.

Maintaining a connection despite Alzheimer’s

Even as Diane’s Alzheimer’s continues to progress, the couple of 57 years still shares special moments.

“My wife knows she knows me, even if she doesn’t remember my name,” Joe said. “And she likes to look at flowers.” Joe would bring flowers from their garden at home, but as fall progresses, he’s stopping at the grocery store to buy fresh ones to ensure Diane always has a pleasant view.

Joe, who has become one of the leading fundraisers for the Colorado Springs office of the Alzheimer’s Association of Colorado, has one piece of advice for other families facing an Alzheimer’s diagnosis: take advantage of the free services the Association has to offer.

“After my first caregiver session, I said ‘this is for me,’” he said, noting that Diane also enjoyed the programs for persons with early stage Alzheimer’s. “Caregivers need this.

“Caregivers have a reward coming,” he said. “When we die, we go straight to heaven.”