Category / Alzheimers Dementia

Committing to Memory

February 8, 2019

More than 5 million Americans are living with Alzheimer’s disease. Is it time for you to talk to your doctor about Alzheimer’s?

If there’s one thing that worries seniors, it’s the prospect of developing signs of dementia. These fears prompt many to visit websites that claim to provide online tests for Alzheimer’s disease.

While these Internet tests may do a good job of presenting their material in an understandable and usable way, research reveals them to be ineffective for diagnosing Alzheimer’s. According to a study presented at a recent Alzheimer’s Association International Conference, online Alzheimer tests are inaccurate, unscientific and unethical.  Don’t waste your time or money on online tests that may only make you more anxious about your memory issues!

A battery of tests and expert interpretation are required to make an accurate diagnosis. If you have concerns about your memory, it may be time to talk to your doctor about Alzheimer’s testing. Your doctor can tell you for sure whether your memory issues are related to Alzheimer’s or dementia.  And if you do have Alzheimer’s, there may be medications that can slow the progression of the disease. 

For more information about Alzheimer’s, visit the Alzheimer’s Association website  or tap into our additional Senior Experience here.  

Should You Adopt an 80-Year-Old?

February 1, 2019

Five programs that provide assistance for struggling older adults
By Lisa Fields

Everyone of a certain age remembers Sally Struthers’ Save the Children TV commercials, encouraging viewers to improve the life of an impoverished child in a developing nation by sponsoring him or her for the price of a cup of coffee a day. Many organizations still let people sponsor underprivileged children. But if you’d rather sponsor a struggling older adult with limited resources, there are a number of programs available.

“Lots of older adults are barely making ends meet,” says Homa Rostami, board member of the California-based Adopt an Elder Foundation. “They fought in wars and are kind of forgotten. They might just need a [little] more a month.”

Programs for older adults in need can provide tangible results. If you’re hoping to make a difference in the lives of adults across the country or around the world, consider programs like these:

Unbound

This Kansas-based nonprofit can pair you with a 60-plus adult needing assistance who lives in a developing nation in Asia, Africa or Latin America, to help him or her age with dignity. Many older adults spent decades performing manual labor. Now, their health is declining, their mobility is limited and they may not have many social services available to them. Sponsors donate $36 per month, which provides older adults with food, medical care, support groups and recreational activities. Donors receive photos of, and letters from, their beneficiaries. More than half of donors are over 50.

“We often hear that our elders in the developing world and their sponsors are able to bond over similar challenges, such as illness, losing a spouse of other family member or children moving away,” says Andrew Kling, Unbound’s community outreach director. “Both the families we serve and our sponsors frequently tell us that the letters and photos they receive become cherished possessions.”

The program serves more than 31,000 elders from 18 countries and has allowed people to sponsor older adults since 1984.

Adopt an Elder

It isn’t safe for every older adult to continue living independently, but some can’t afford to move to assisted-living facilities. This nonprofit provides financial aid to older adults in Northern California, supplementing their incomes by $350 per month so they can live in facilities providing the appropriate level of care. This provides a needed financial boost since many people come up a few hundred dollars short of what they would need to stay in assisted living facilities.

Many are introduced to the program by their doctors or social workers if the professional is concerned that the older adult is no longer able to safely live alone. (The program itself isn’t involved with moving people directly into facilities.)

Donors typically provide $25 per month to the program. You won’t be paired with one individual, but you can interact with beneficiaries by distributing holiday gifts with volunteers in December. Beneficiaries appreciate the help they receive, which allows them to enter assisted-living communities for life.

“They always talk about the social engagement, having someone to talk to,” Rostami says. “They say, ‘It’s nice that I’m not alone anymore.’”

This year, the program has helped 72 older adults remain in assisted living facilities. The nonprofit has existed since 2001.

Adopt A Senior

Here, you can develop relationships with long-term-care facility residents, some of whom who have few or no visitors.

People donate $50 annually through this New Jersey-based nonprofit to provide every resident of five long-term-care facilities in New York and New Jersey with personalized birthday gifts, holiday gifts and two seasonal gifts. Volunteers visit the facilities monthly for birthday celebrations, games and conversations, which help ease residents’ loneliness. You can meet the person you’re paired with if you choose to hand-deliver gifts with volunteers during these events. Some people stay in touch by phone or letter.

“They consider us their ‘family,’ and we feel the same about them,” says Annye Cohen, Adopt A Senior’s president and co-founder. “Our motto is: Seniors should never be forgotten, and we strive to do that each and every day.”

The program serves 1,300 older adults. Since 2014, it has distributed more than 9,000 gifts.

Adopt a Native Elder

Many older adults in remote areas of the Navajo Reservation in Utah and Arizona live below the poverty line. This nonprofit provides assistance beyond what the reservation’s elder care programs can address.

Donors provide $200 annually, covering the cost of a year’s worth of food for an older adult. The program also provides Navajo elders with medicine, clothing, firewood and other essentials. Once you sign on through this Utah-based nonprofit, you’ll receive a photo of the elder you’re paired with, along with his or her contact information, and you’ll be encouraged to stay in touch.

“Friendships that last a lifetime may develop between the elders and people who adopt them,” says Linda Myers, founder and executive director of Adopt a Native Elder.

Since 1991, the program has helped more than 2,000 Navajo elders. Today, over 560 older adults are enrolled in the program.

Be a Santa To a Senior

With this program, you can deliver holiday gifts to older adults across the U.S. and Canada who are identified as at-risk for loneliness, which helps them feel like they’re a part of a meaningful community.

Those who are identified as potentially lonely by local organizations request simple necessities like blankets, gloves and personal care items. Once you receive someone’s wish list, you shop, then return with the requested gifts.

This Nebraska-based program extends to more than 200 Home Instead Senior Care franchises. Some locations organize delivery events, so if you want to meet the person whom you’ve shopped for, you may be able to connect face-to-face.

“One recipient last year said, ‘I haven’t received a gift in over 10 years, and it made me feel so good to open a gift and to just have something new,’” says Jeff Huber, president and CEO of Home Instead Senior Care. “We hope that these small moments help to alleviate feelings of loneliness, so seniors are not only happier, but healthier each holiday season.”

Since 2003, more than 700,000 older adults have received gifts, and more than 1.2 million gifts have been given through the program.

By Lisa Fields

Lisa Fields is a writer who covers psychology and health matters as they relate to the workplace. She publishes frequently in WebMD and Reader’s Digest.

18 Questions to Ask Any Nursing Home

January 14, 2019

How to find a place that wants to be a real home
By Denise Logeland

Part of the Transforming Life as We Age Special Report

What makes a nursing home a good place for you or your parents? While “good” can mean a lot of things, it should include qualities like dignity and self-determination for the people who live there. The Pioneer Network offers tips on how to check for those qualities.

Formed 20 years ago, the nonprofit Pioneer Network is made up of professionals who work in long-term care, people who live in long-term care and families who advocate for them. The network, active nationally and through coalitions in 36 states, belongs to a broad-based movement in long-term care that is sometimes called simply “culture change.” That is a movement away from generic, system-based care and toward more individual, person-directed care. With culture change, residents have a large voice in the care they get and have as many of the freedoms they had in their earlier homes as possible.

You can find out if a nursing home is guided by the principles of culture change by asking specific questions when you visit to take a tour. A few examples:

  • Can residents wake up when they want to in the morning?
  • How do you get to know the people who live here?
  • How do you build a sense of community and give those who live here a voice in how things are done?
  • What is the turnover rate for the direct care workers on your staff?

There are 18 questions in all to ask at nursing homes, and a similar set of 16 to ask when looking at assisted living facilities. You can see the questions and the answers to listen for on the Pioneer Network website, where they are also available as downloads.

Denise Logeland is a writer and editor in Minneapolis who has covered business, health and health care. She is the author of Next Avenue's ebook, 10 Things Every Family Should Know: Aging With Dignity and Independence.

One Doctor’s Plea: Consider Palliative Care

January 2, 2019

An oncologist grapples with letting patients suffer when there’s an alternative

By Grace Birnstengel

For some people facing a terminal illness or the end of life, transitioning to palliative care (care given to improve quality of life for patients with life-threatening diseases) can signify quitting. They see it as surrendering to what’s ailing them and giving up the fight. But Dr. Isaac Chan, a medical oncology fellow at Johns Hopkins Hospital, wishes people would look at palliative care differently. It just might provide the blessings of time and peace, he believes.

Chan understands that holding onto every ounce of life is an expected reaction, even if it means enduring more pain and suffering for little or no payoff. In an essay published in The Washington Post, he writes about the difficulty for patients in approaching the decision to continue with treatment or pursue palliative care. He sees that struggle all the time at the hospital.

“I am watching a 68-year-old man fall apart,” Chan writes. “He has been through five different types of chemotherapies, yet his kidney cancer continues to grow and metastasize, spreading to different organs. He now sits hunched in his wheelchair. With his worsening diarrhea, and sores in his mouth, he no longer eats with pleasure. Sleeping a few hours without pain has become a luxury.”

In the patient’s eyes, chemotherapy will help him live longer, and his goal is beating the cancer. When a doctor like Chan knows that’s not realistic, he’s put in a tough spot.

Palliative Care Can Grant Time and Peace

In his empathetic and thought-provoking essay, Chan grapples with balancing having frank conversations with patients, explaining the benefits of palliative care in their situations, with the top priority: respecting a patient’s wishes.

He explains to one patient that concentrating on reducing symptoms instead of treating his cancer would provide relief. And, he adds, studies show he could live longer with palliative care instead of having more chemotherapy.

As we’ve pointed out in previous Next Avenue reporting, palliative care has proven benefits of lowered stress and depression in patients and caregivers; reduced pain and better control of other symptoms and better clinical outcomes.

Though palliative care might seem like the obvious route to doctors like Chan, they have to meet patients where they’re at.

What This Doctor Has Learned About Palliative Care

“If the patients are not ready [for palliative care], instead of feeling relief, they may experience this advice as abandonment,” Chan writes.

Chan has learned that no matter what statistics or studies say about the clear benefits of palliative care in the cases of the terminal illnesses he treats every day, that’s not always going to be appealing or meaningful to patients. You can’t always apply logic or science to things as all-consuming or deep as the end of your life.

“Sometimes what our patients need most is just more time: time to accept the terminal diagnosis and time to grieve and hopefully find peace,” notes Chan.

Though the doctor’s perspective is not the one that truly matters at the end of someone’s life, it’s interesting to hear from Chan about how he views these challenging issues where doctors are assessing not only physical needs, but emotional and spiritual ones as well.

“The biggest lesson I have learned is that our role is to support our patients so that they can have they dignity to make these difficult choices and feel empowered to make their own paths, no matter how frightening the decision may be,” Chan says.

By Grace Birnstengel

Grace Birnstengel is an editor at Next Avenue. Her work has appeared in Minneapolis-St. Paul's alt-weekly City Pages, the St. Paul Pioneer Press, Stereogum.com, The Riveter Magazine, VICE's Live Nation TV, 89.3 The Current and more. She most recently worked as an editor for a B2B magazine in New York City. She holds a degree in journalism and gender, women and sexuality studies from the University of Minnesota–Twin Cities where she was the editor-in-chief of the student magazine, The Wake. Reach her by email at gbirnstengel@nextavenue.org.

What Hospice Does and Doesn’t Do

December 11, 2018

Know what's offered so you can make informed decisions ahead of time
By John F. Wasik

Part of the Living to the End of Life Special Report

(Editor’s note: This story is part of a special report for The John A. Hartford Foundation.)

More than once in my life, I wish I knew more about hospice care, which is a sustained focus on quality-of-life near the end of a journey. A deeper working knowledge would have made the closing days of several loved ones’ lives more comfortable.

Yet no doctor or adviser even suggested hospice care to my family as we grappled with the end stages of cancer. It was only later that I discovered how much hospice care has to offer — and how millions of families can benefit from its humane mode of care.

What Hospice Can Do

Generally, hospice is requested by a doctor who gives a prognosis of six months or less. It’s usually covered by health insurance plans and Medicare.  Some life insurance policies are even offering riders that provide “accelerated benefits” for the terminally ill. What surprised me, sadly after the fact, was how much hospice had to offer.

Keep in mind that hospice is a subset of palliative care, which can be provided to any patient, regardless of whether he or she is diagnosed with a terminal illness. This maximizes the patient’s overall comfort, reduces chronic pain and focuses on bolstering quality of life. Think dignity and humane decisions instead of dehumanizing technology and relentless treatment.

When a doctor “certifies” for hospice care, that triggers a range of services that will be covered by Medicare Part A. In addition to medical and nursing services, also provided are social work, grief counseling and even physical and occupational therapy. The emphasis is on accommodating the entire family and enhancing the patient’s comfort. Here’s how the Medicare hospice care benefit works if you need, and qualify for, it:

  • Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill; that is, you’re expected to live six months or fewer. Note: Only your hospice doctor and your regular doctor can certify that you’re terminally ill and have a life expectancy of six months or fewer.
  • You accept palliative care for comfort instead of conventional care to cure your illness.
  • You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.
  • After six months, you may continue to receive hospice care as long as the hospice medical director or hospice doctor re-certifies — at a face-to-face meeting — that you’re terminally ill.

Medicare is actually fairly generous on what it covers, paying for “any other Medicare-covered services needed to manage your pain and other symptoms related to your terminal illness and related conditions, as recommended by your hospice team.”

What Hospice Doesn’t Do

Most hospice care can be offered at home or in a non-medical facility, which includes long-term care settings such as assisted living and memory care. Hospice, however, doesn’t cover room and board fees at senior communities.

Instead of providing endless surgeries and treatments, hospice focuses exclusively on the comfort of the patient. The palliative portion of the care may offer an array of pain medications while not treating the cause of the terminal illness.

If a patient is suffering from cancer, for example, he or she would be offered extensive pain-killing drugs, but not radiation or chemotherapy. Frequent trips to hospital emergency rooms are generally avoided.

Medicare also specifies what’s not covered by hospice care. Unless a facility is approved to provide this kind of care, you may not receive reimbursement. You can’t assume that every institution is qualified. Here are some additional requirements, according to the National Hospice and Palliative Care Organization:

  • In addition to federal rules, there are state licensing requirements that must be met by hospice programs for them to deliver care.
  • Hospices must periodically undergo inspection to be sure they are meeting regulatory standards to maintain their license to operate and the certification that permits Medicare reimbursement.
  • A growing number of hospice programs have their own hospice facilities or have arrangements with other facilities. Some patients may require a different place to live during this phase of their life when they need extra care. However, care in these settings is not covered under the Medicare or Medicaid Hospice Benefit. It is best to find out — well before hospice may be needed — if insurance or any other payer covers this type of care or if patients or families will be responsible for payment.

Plan for Hospice When You’re Healthy

One of the most granite-like barriers for families considering hospice care as an option is that they’ve seemingly admitted defeat in trying to battle terminal illnesses such as cancer.

“People think that end-of-life decisions are things that only doctors should deal with,” says Dr. Carolyn McClanahan of Jacksonville, Fla. “We need to change the conversation.”

Yet reframing the end-of-life decision, McClanahan says, should concentrate on life quality, which should be first defined by patients and families, not medical institutions.

What’s the best way to approach the hospice decision? Make it a family conversation. Consult with doctors and other trusted advisers such as financial planners and estate-planning lawyers. Have your loved one and family talk it through with hospice or palliative care professionals. You’ll also need to get wills, trusts, powers of attorney and beneficiary designations for assets and insurance in order.

While making the decision to enter into hospice care is perhaps one of the most agonizing decisions a family can make, many wait too long to seek this specialized care. The average length of stay in hospice care is less than 70 days, according to the National Hospice and Palliative Care Organization. Only 12 percent of people in hospice remain in hospice past 180 days.

“Plan when you’re healthy,” advises McClanahan.

At the very least, educate your family on the benefits of hospice and palliative care. Although it won’t make end-of-life decisions any easier, it may ease the anguish when the time comes.

By John F. Wasik

John Wasik is the author of Lightning Strikes: Timeless Lessons in Creativity from the Life and Work of Nikolas Tesla (Sterling, 2016) and 16 other books.

Get by with a little help from Presbyterian SeniorCare Network

November 26, 2018

Get by with a little help from Presbyterian SeniorCare Network
Alzheimer’s support services are available across our Network

Alzheimer's disease is life-changing for both those who are diagnosed and those close to them. Having a helping hand when you need it is key to keeping yourself, and your loved one living with dementia, healthy and happy. When you need a little help or an ear to listen, support services are available.

Support groups

Often times, caregivers say they are looking for support from people who "really understand because they've been there." An Alzheimer's Support Group offers just that – a place for caregivers, family and friends of persons with dementia to meet and develop a support system.

Support groups offer a place to:

  • Exchange information on caregiving problems and solutions
  • Talk through challenges and ways of coping
  • Share feelings, needs and concerns

Presbyterian SeniorCare Network, in affiliation with the Alzheimer’s Association, holds support group meetings in various locations:

We hope you'll join us! 

Pet Therapy Brings Smiles!

November 21, 2018

When the pets visit, our residents light up and smile from ear to ear! Who doesn’t love doggie kisses, soft fur and a few barks? Pet therapy happens about once a week at Woodside Place of Oakmont, and the residents sure look forward to it.

We have many pets that visit Woodside Place, but some of our furry friends are registered therapy dogs. As soon as one of our therapy dogs enter the building, the residents begin interacting; approaching the dogs to pet them and talk to them. Residents who are quiet often begin speaking, sharing stories of a pet they once had. And let’s not forget our team members—they love pet interactions as well. Visits have helped start conversation and create special bonds and good memories.

Also, the pet therapy sessions have physical and therapeutic benefits for our residents. If a resident needs more exercise in their day, they will get it by walking a dog; we’ve found that residents are much more willing to move around if they are walking with a furry friend! 

If a resident needs help with fine motor movements, we give the resident a small brush and have them brush a dog.

Plus, therapy animals offer stress relief! Residents enjoy relaxing in their favorite chair with an animal on their lap to pet.

Pet therapy has had a positive impact on the residents and team members at Woodside Place, and we look forward to having more pets visit in the future.

Are you a Caregiver? Take time to caring for yourself!

November 20, 2018

Caring for a loved one with dementia can include helping with chores, medication, bathing and grooming. As the disease progresses, your loved one relies on you even more. This hard work can take a toll on care partners.

According to the Alzheimer’s Association, about three out of four people report feeling concerned about maintaining their own health, and their work and social lives are usually also affected. Being an effective care partner for your loved one means also taking better care of yourself.

Fortunately, there are national and community resources available to find support and advice:

Excellence in Dementia Care

November 19, 2018

As a leader in dementia care for more than 25 years, Presbyterian SeniorCare Network is recognized as a Dementia Care Center of Excellence. In 1991, we set the standard when we introduced our cutting-edge residential community, Woodside Place of Oakmont, which has been replicated more than 100 times nationally and internationally. From Woodside Place, we developed the Woodside model and philosophy of care—standards and best practices that solidify the specialized expertise and commitment to excellence in dementia care that we have across our Network.

Recognizing that a majority of older adults may experience some level of cognitive impairment over time, our organization invests consistently in training and education for all of our team members. In fact, each team member at every level of our organization is certified in dementia care through the National Alzheimer’s Association at the time of hire. Additional in-depth training is provided annually for team members who provide direct care for individuals living with Alzheimer’s and other dementias. We have more than 70 team members who are certified dementia care practitioners that our front-line team members can call upon for even greater support and expertise.

We continue to explore new ways to enhance the lives of persons living with dementia. We have spearheaded a unique collaboration to demonstrate the therapeutic benefits and positive outcomes that can be achieved through rehabilitation therapies for persons living with Alzheimer’s disease and related dementias. A world-renowned gerontology expert and one of our trusted advisors, Steven Zarit, PhD, will be overseeing this research project, which will be a joint effort between our Rehabilitation Center of Excellence and our Dementia Care Center of Excellence.

Woodside Place: The Capstone of a Tradition of Innovation

November 16, 2018

Presbyterian SeniorCare Network has had many pioneering moments in the 27 years since it established Woodside Place of Oakmont, a groundbreaking new model of dementia care.  Not only was Woodside Place one of the nation’s first residential care communities designed specifically to meet the needs of older adults living with Alzheimer’s and related dementias, but it was the foundation of the person-centered culture and care model that is part of the fabric of Presbyterian SeniorCare Network today.

When the original leadership team visited a unique residential Alzheimer’s facility in England in the late 1980s, they returned to the United States even more determined to create a compassionate environment that would be in complete contrast with the regimented institutional models prevalent at the time. With grant support from several local foundations, we enlisted the help of Pittsburgh dementia expert Judith Saxton, PhD.

“Dr. Saxton became a trusted adviser right from the start and her input was invaluable to our programming, design and evaluation of the original resident population,” says Jim Pieffer, senior vice president of Presbyterian SeniorCare Network and a member of the leadership team that made the trip to England 30 years ago. “We were really breaking new ground in dementia care, so we relied heavily on Dr. Saxton’s expertise.”

Dr. Saxton had made a name for herself in the cognitive disorders of aging field while on staff at the University of Pittsburgh and later at the Alzheimer’s Disease Research Center (ADRC). Her career-defining achievement occurred while working with us on the design of Woodside Place.  Dr. Saxton developed the Severe Impairment Battery (SIB), a group of tests that made it possible to evaluate dementia patients as their skills declined. It was significant not only in its use as an evaluation tool in the clinical setting, but also as a pharmaceutical measurement in the development of one of the earliest drugs used to treat Alzheimer’s disease.

According to Francois Boller, MD, PhD, former director of the ADRC and Dr. Saxton’s supervisor and collaborator, “Judy led a team that devised a battery of tests for people who are much more severely impaired. Until then, there was no way of quantifying people with severe dementia. Her test was very simple. You talk to the person, see if the person pays attention to you, and show them some simple items, such as a cup, a knife. You see if the person can use them, can recognize colors. The beauty is that it is universal—every culture has these items—so the test can be used in any country. The SIB test has been translated into many languages and is still in use today worldwide.”

The SIB test also was used to evaluate the effectiveness of the Woodside Place model and confirmed that the model truly was improving the quality of care for the residents. “She also created a tool that allowed us to measure residents’ strengths as well as their limitations, because it was important for Woodside Place staff to know each resident’s capabilities and focus on preserving them as much as possible,” says Anna Scott, who was the original dementia services coordinator at Woodside Place. “It allowed us to give families some positive news and not just report their family member’s decline.”

We are grateful for the groundbreaking work that created Woodside Place.  It spawned a new person-centered care model, which set the standard for dementia care. In 2016, for the 25th anniversary of Woodside Place, we honored Dr. Saxton with the Samuel K. McCune Award for Distinguished Service.  Dr. Saxton has now retired from the University of Pittsburgh but continues to be involved in aging research as a consultant to a number of dementia studies around the world.

 
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