Agenda for 2016 Annual Research Symposium – Register today!

Join us on October 11 at the Chicago Botanic Garden to gain knowledge and insights on Alzheimer’s and other dementia-related research topics designed to increase awareness and enhance skill sets. View our full Symposium agenda, including session descriptions: Family Track sessions are more general in nature and contain simple medical terminology while Advanced Professional I & II sessions are clinical and research focused. Sign up today!

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Hospice care may be right for someone with Alzheimer’s

Hospice care focuses on comfort and dignity at the end of life. Rather than providing treatment, the primary purpose of hospice care is to manage pain and other symptoms. It involves care and support services that can be of great benefit to people in the final stages of Alzheimer’s disease and their families.

Hospice care focuses on comfort and dignity at the end of life; it involves care and support services that can be of great benefit to people in the final stages of Alzheimer’s and other dementias and their families.

• What is hospice care?
• Starting care
• Length of care
• Costs

What is hospice care?

Hospice providers with expertise in dementia can help families understand what to expect in the final stages of Alzheimer’s and provide support throughout the end-of-life process.

Hospice is a special way of caring for people who are terminally ill — and for providing support to their family. Rather than providing treatment, the primary purpose of hospice care is to manage pain and other symptoms during the last six months of life.

Hospice care is provided by a team of specially trained providers, including doctors, nurses, home health aides, social workers, counselors, clergy and volunteers.  Family is often very involved in the care.
Examples of the care hospice teams provide include:

• Medical care to alleviate symptoms and pain (including medications and medical equipment)
• Counseling about the emotional and spiritual impact of the end-of-life
• Respite care to allow caregivers relief
• Grief support for the family

The majority of hospice care is provided at home or in a nursing facility. There are also some free-standing hospice facilities and hospice units within hospitals in certain parts of the country.

We Can Help

Your local Alzheimer’s Association can provide referrals to hospice care in your area.
The Hospice Foundation of America has information on how to locate a hospice, questions to ask when selecting a hospice, and resources related to hospice care and grief.
The National Hospice Foundation website offers guidance in finding and selecting a hospice program.
The National Hospice and Palliative Care Organization has a variety of free resources on topics including advance care planning, hospice and palliative care, and grief and loss.

How do you start hospice care?

5 Questions to Ask When Selecting a Hospice Provider

1. Does the provider have a 24-7 call line?
2. Have the workers provided hospice care to other patients with Alzheimer’s?
3. How long has the agency been open?
4. Does the hospice offer specialized services to improve the patient’s comfort?
5. Is this hospice program Medicare certified?

To begin hospice care, an individual must have a life expectancy of six months or less. A physician’s referral is needed. If you believe your family member is in need of hospice services, communicate this to the physician currently providing care. You also can begin a self-referral process by contacting local hospice programs, which can be located at www.hospicedirectory.org.

Before hospice care begins, the hospice team meets with the referring physician as well as the family to create an individualized care plan. Once care begins, the family has 24-hour on-call access to hospice staff.

Hospice care can be stopped at any time.

How long can hospice services be received?

Hospice services are usually available for as long as they are needed. If someone receiving hospice care lives beyond six months, services are usually still covered by Medicare, Medicaid and many private insurers as long as a physician recertifies that the person is terminally ill and still meets hospice care requirements.

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Costs

Hospice is usually covered under Medicare, as well as many Medicaid and private insurance plans.

For detailed information on Hospice Medicare Benefits, download our handout (PDF).

With Medicare, there are no deductibles and only limited coinsurance payments for hospice services.

Medicare covers hospice care if:

• The person receiving care has Medicare Part A;
• The person’s physician and a hospice medical director certifies terminal illness, that is, life expectancy is six months or less, if the illness runs its normal course; and,
• The person (or person with durable power of attorney) elects to receive hospice care and waives the right for Medicare to pay for any other services to treat the terminal illness. Instead, Medicare pays the hospice and any related physician expenses. Medicare will continue to pay for any services not related to the terminal illness.

In some cases where a person does not have coverage, community donations make services possible.

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Why I Walk…Anne’s story

My dad was only 65 when diagnosed with Alzheimer’s. People at work began noticing he wasn’t himself until one day he couldn’t remember what to do for his job and they had to call Mom. Dad didn’t want us telling other people he had dementia because he didn’t want to be treated differently. I think that’s part of the reason why it’s so hard to explain to people what it feels like to watch a person you love lose a part of themselves

I Walk to End Alzheimer’s because of my dad, who is in the first stage of Alzheimer’s. My dad was only 65 when diagnosed. At home, we didn’t really notice anything wrong because he always did his normal routine, but as time went on, people at work began noticing that he was not being himself. One day at work, he just suddenly couldn’t remember what he was supposed to do for his job, and that had never been an issue before. His work had to call and talk to my mom after it happened a few times. Then when my dad was diagnosed, his employers were nice enough to do a layoff time leading up to the date that he could retire from their business.

There are times he forgets and gets upset; never really knowing if it is something he truly forgot or just the dementia. When my dad starts talking about the past, I let him. When he starts to remember something, I don’t say if it was from yesterday or from way back when, I just let him remember. Even if he repeats things, I still listen. I usually won’t stop him unless he is making himself upset. I see he still wants to do normal things, like mow my lawn, because it’s one thing he has not forgotten how to do. I’ve watched him struggle with other everyday tasks like reading, and now he doesn’t even read the paper anymore like he used to do.

He was always there for me when I needed him. It kills me to see him lose his temper so easily, when I know he was always pretty hard to aggravate. My girls now don’t even know how to act around their grandpa because they don’t know how he’ll react. They usually try to base it off the way he is acting. If he seems to be in relatively good mood, then my girls will play along with their grandpa. Yet, there are times he starts out in a good mood, and then soon turns upset. This is why we need to find a cure. Grandkids shouldn’t have to worry about how to act around their grandparents. They should always be ready to go hang with them and have fun. This is the reason why, back in February of 2015, my oldest daughter asked her volleyball coach to do an Alzheimer’s fundraiser with the team. They were able to donate the money they raised to two Alzheimer’s homes in Effingham, IL. They were also awarded for being the first grade school by IESA to do an Alzheimer’s fundraiser game. We do what we can in my family to help the cause.

Alzheimer’s disease is a topic that most people don’t want to talk about. My dad didn’t want us telling other people that he had dementia because he didn’t want them to treat him differently or walk on eggshells around him. I think that is part of the reason why it’s so hard to explain to people what it feels like to watch a person you love lose a part of themselves.

I participate in the Bloomington-Normal Walk to End Alzheimer’s because I don’t want someone else to go through what I have gone through. We need to find a cure so the past doesn’t get lost forever. We will never stop walking. We will walk until a cure is found. This is Why I Walk to End Alzheimer’s.

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Woman honors her mother by fighting Alzheimer’s disease for future generations

Judy Steed’s mother, Marilyn, was diagnosed with Alzheimer’s in her late 60s, and died with the disease a year ago at 82. Judy is now in her mid-60s; after what happened to her mother, she doesn’t want anyone else to have to go through the same experience. She’s participating in the Alzheimer’s Association Walk to End Alzheimer’s® to honor her mother and to raise funds and awareness to fight this devastating disease

My mother Marilyn was diagnosed with Alzheimer’s in her late 60s, but I recognized that something was wrong in her mid-60s. She had been displaying signs of nervousness and was more forgetful than usual. She had always been a very outgoing and confident woman who dressed very fashionably. One day I noticed that her skirt hem was hanging and that she wasn’t taking the same care in her appearance.

My mother succumbed to Alzheimer’s disease one year ago. She was 82 when she died.

Now I am in my mid-60s. After experiencing what happened to my mother, I wouldn’t want anyone else to have to go through what she did. When she began wandering and leaving their home, my stepfather couldn’t keep up with her, and she was moved to a memory care facility. While there, she broke her hip. That led to three years in bed, never walking or talking again.

Every story about Alzheimer’s is heartbreaking.

We all have to watch someone we love slowly disappear. My family wasn’t even given a respite. One year ago, my stepfather too was diagnosed with Alzheimer’s. Our family’s first reaction was: “Oh no, not again!” It seems like almost no one we know is unaffected by this disease in some way. That is why I Walk.

I have Walked in the Walk to End Alzheimer’s for eight years and have raised over $35,000.

I am an artist and have put on shows in which I have donated 100% of the proceeds to the cause. I collect for Forget-Me-Not Days and traveled to Springfield, Illinois this year to implore legislators to procure more funding for the Alzheimer’s Association. I never knew that raising funds for Alzheimer’s would become my passion. I Walk because my mother was my best friend. I Walk because she couldn’t Walk for herself. I Walk because I know she would have done the same thing for me.

It feels like we have rounded a corner. It seems like Alzheimer’s is finally getting the attention it deserves.

I have faith that a cure will be found. That takes a lot of funding and research, but I believe that if everyone who has any connection to Alzheimer’s would Walk and spread the word by advocating on behalf of the Alzheimer’s Association, the cure might come faster. I have rarely met anyone who hasn’t been touched by this memory-robbing disease. We need to fight for all those people who can no longer speak for themselves, like my mother and so many others. We must Walk.

About the Author:  Together with her family and friends, Judy Steed is participating in Walk to End Alzheimer’s with her team “Marching for Marilyn.” You can visit Judy’s Walk page here.

Learn More:

• Walk to End Alzheimer’s
• Caregiver Center
• Participate in a Clinical Trial

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Look Who Is Turning 65

View the celebrities turning 65 in September.

Look Who’s Turning 65

Sept. 7—Chrissie Hynde

Best known as a founding member of the rock band the Pretenders, Chrissie Hynde has been the only constant member of the band throughout its history. “I saw her play in Central Park [when the Pretenders played in August 1980],” Madonna recalled. “She was amazing: the only woman I’d seen in performance where I thought, Yeah, she’s awesome! . . . It gave me courage, inspiration, to see a woman with that kind of confidence in a man’s world.”

Born in Akron, Ohio in 1973, Hynde later moved to London, where she landed a position at the music magazine NME and got to know Johnny Rotten and Sid Vicious (of the Sex Pistols). In the midst of the early punk movement, she joined several short-lived bands. In 1978, Hynde started putting together a band with Pete Farndon (bass guitar, vocals), James Honeyman-Scott (guitar, vocals, keyboards) and Martin Chambers (drums, vocals, percussion). The name Pretenders was inspired by the Sam Cooke version of the Platters’ 1955 R&B song “The Great Pretender.”

They recorded a demo tape (including “Precious,” “The Wait” and a Kinks cover, “Stop Your Sobbing”), produced a single (“Stop Your Sobbing”/”The Wait”) and performed their first gigs in a club in Paris. The single was released in January 1979 and hit the Top 30 in the U.K. Later that spring (1979), the Pretenders recorded their eponymous first album and hit the charts in the U.K. and U.S. with the song “Brass in Pocket.” The band released an EP album, titled Extended Play, then Pretenders II later in the summer, which included “Talk of the Town” and “Message of Love.”

Hynde has also released numerous hits with other musicians, including Frank Sinatra, UB40, Sheryl Crow and Emmylou Harris. In 2005, the Pretenders were inducted into the Rock and Roll Hall of Fame in Cleveland, Ohio. In 2014, Hynde released a new album, Stockholm, featuring contributions from Neil Young and John McEnroe. In 2015, she published an autobiography, Reckless: My Life as a Pretender. Hynde is also an animal rights activist and a supporter of PETA and the animal rights group Viva! She lives in London and also has an apartment in the Northside Lofts in her hometown of Akron.

Sept. 5—Michael Keaton

The actor, comedian, producer and director first rose to fame for his comedic film roles in Night Shift (1982), Mr. Mom (1983), Johnny Dangerously(1984) and Beetlejuice (1988), and he earned further acclaim for his dramatic portrayal of the title character in Tim Burton’s Batman (1989) andBatman Returns (1992). Keaton’s critically praised lead performance in Birdman (2014) earned him several awards. Keaton first appeared on TV in Pittsburgh public television programs, includingMister Rogers’ Neighborhood (1975). After moving to Los Angeles, he appeared in various popular TV shows, including Maude and The Mary Tyler Moore Hour. Around this time, Keaton adopted a stage name to avoid confusion with well-known actor Michael Douglas and daytime host Mike Douglas. He chose Keaton because of an affinity for the physical comedy of Buster Keaton. He showed off his comedic talents with James Belushi in the short-lived comedy series Working Stiffs, which led to a co-starring role in the comedy Night Shift, directed by Ron Howard. His role as the fast-talking schemer Bill “Blaze” Blazejowski earned Keaton critical acclaim, and he scored leads in the subsequent comedy hits Mr. Mom, Johnny Dangerously and Gung Ho.

His title character in Tim Burton’s 1988 horror-comedy Beetlejuice earned Keaton widespread acclaim and boosted him to movieland’s A-list. Keaton’s career was given another major boost when he was again cast by Tim Burton, this time as the title comic book superhero of 1989’s Batman. Keaton’s dramatic performance earned widespread acclaim from critics and audiences alike, and Batman became one of the most successful films of the year. During the 1990s, Keaton appeared in a wide range of films, includingPacific Heights, The Paper and twice in the same role as Elmore Leonard character Agent Ray Nicolette, in Jackie Brown and Out of Sight. In the early 2000s, Keaton appeared in several films with mixed success, including Live From Baghdad (for which he was nominated for a Golden Globe award), First Daughter, White Noise and Herbie: Fully Loaded. While he continued to receive good notices from the critics (particularly for Jackie Brown), he was not able to revive the box-office success of Batman until the release of Disney/Pixar’s Cars(2006), in which he voiced Chick Hicks.

For his role in the 2007 TV miniseries The Company, Keaton received a 2008 SAG nomination for Outstanding Performance. He provided the voice of Ken in Toy Story 3 (2010), which received overwhelmingly positive acclaim and grossed over $1 billion worldwide, making it one of the most financially successful films ever. In 2014, Keaton starred in Birdman as a screen actor famous for playing the iconic titular superhero, who tries to regain his former glory. For his portrayal, he won the Golden Globe Award for Best Actor in a Musical or Comedy and received an Academy Award nomination for Best Actor. In the 1980s, Keaton bought a ranch near Big Timber, Montana, where he spends much of his time.

Sept. 20—Guy Lafleur

The Canadian former professional ice hockey player was the first player in the National Hockey League (NHL) to score 50 goals and 100 points in six straight seasons. Between 1971 and 1991, he played for the Montreal Canadiens, New York Rangers and Quebec Nordiques in an NHL career spanning 17 seasons, and five Stanley Cup championships (all five with the Canadiens). Lafleur started playing hockey at the age of 5 after receiving his first hockey stick as a Christmas present. In his teens, Lafleur gained considerable recognition for his play as a member of the Quebec Remparts of the Quebec Major Junior Hockey League, where he led his team to the Memorial Cup in 1971, scoring 130 regular season goals. He was a cornerstone of five Stanley Cup championship teams. He was one of the most popular players on a very popular team; fans chanted “Guy, Guy, Guy!” whenever he touched the puck. He became known among English fans as “Flower” due to the literal translation of his surname, while among French fans he was dubbed “le Démon Blond” (the Blond Demon).

When the Canadiens’ dynasty came to an end in 1979 and injuries shortened Lafleur’s 1980–1981 season, he decided to retire. After being inducted into the Hockey Hall of Fame, he came out of retirement to return to the NHL for three more seasons, from 1988 through 1991, with the New York Rangers and the Quebec Nordiques. Due to a grandfather clause, Lafleur remained one of the few players who did not wear protective helmets. He is the all-time leading scorer in Canadiens history, notching 1,246 points (518 goals and 728 assists) in his 14 years with the Habs. He led the NHL in points in 1976, 1977 and 1978. Lafleur was also the fastest player (at the time) to reach 1,000 points, doing so in only 720 games. In 1988 Lafleur was inducted into the Hockey Hall of Fame. In 1998, he was ranked No. 11 on The Hockey News’ list of the 100 Greatest Hockey Players. Lafleur currently operates a helicopter rental company in Montreal that shuttles VIPs to and from the airport.

Sept. 25—Mark Hamill

The actor is best known for his portrayal of Luke Skywalker in the Star Wars film series. Released in May 1977, Star Wars was an enormous unexpected success and made a huge impact on the film industry. Hamill also appeared in the Star Wars Holiday Special in 1978 and later starred in the successful sequels The Empire Strikes Back andReturn of the Jedi. For both of the sequels, he was honored with the Saturn Award for Best Actor given by the Academy of Science Fiction, Fantasy and Horror Films. In 2015, Hamill appeared in Star Wars: The Force Awakens and will continue to star in the new trilogy, alongside fellow Star Warsactors Harrison Ford and Carrie Fisher.

After the success of Star Wars, Hamill appeared on teen magazine covers. To avoid typecasting, he appeared in the 1978 film Corvette Summer and the better known 1980 World War II film The Big Red One. To further distance himself from his early blockbuster role, Hamill started acting on Broadway, starring in plays such as The Elephant Man in 1979, Amadeus in 1983 and Harrigan ‘N Hart in 1985 (for which he received a Drama Desk Award nomination). After a six-year hiatus, Hamill returned to film with the 1989 science fiction film Slipstream and continued to star in films throughout the 1990s, including the thriller Midnight Ride and The Guyver in 1991. When the Wing Commander series of computer games started using full motion video cut scenes, he was cast as the series protagonist. He also directed and starred in the 2004 direct-to-DVD Comic Book: The Movie, which won an award for Best Live-Action DVD Premiere Movie at the 2005 DVD Exclusive Awards.

Hamill has gained a reputation as a prolific voice actor. Though the voice role he is most known for is Batman’s archenemy, the Joker, his success as the Joker has led him to portray a wide variety of characters in television, film, anime and video games (mostly similar super-villains). Hamill was the voice of The Hobgoblin in the 1990s Spider-Mananimated series, as well as in other Marvel superhero genre roles. Non-comic related television roles include Dr. Jak in Phantom 2040, Christopher “Maverick” Blair in Wing Commander Academy and Buzz Buzzard in The New Woody Woodpecker Show. In animated films, he has voiced roles in Sinbad: Beyond the Veil of Mists, Joseph: King of Dreams andFuturama: Bender’s Big Score. Notable video game voice roles include those in Gabriel Knight: Sins of the Fathers, Soldier of Fortune II: Double Helix and the LucasArts gameFull Throttle.

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