American Public Health Association Annual Meeting in Chicago this Week

Caregivers for seniors often forget to take the time to care for themselves.  The emotional aspects of caregiving stay with us throughout the days and nights and this is why senior caregiving really does go beyond the pay.  The American Public Health Association works towards keeping all of us healthy which includes considering environmental issues.

Chicago will host the APHA’s annual meeting this year, bringing together thousands of professionals working towards good health for all Americans, including seniors and senior caregivers.  They are sharing this infographic to showcase that along with health eating habits, clean air, water and energy also are important to maintain good health.  In addition, Caregiverlist adovcates for planning ahead for senior care needs, in order to know how to pay for senior care (no, Medicare does not pay for long-term senior care) and what the different options may be for senior home care services and assisted living. In addition, there is a need for more senior caregivers to care for the growing number of older Americans.  

infographic describing the health impacts of climate change

Source: Caregiverlist –


Help Me See The Roses

“The optimist sees the rose and not its thorns; the pessimist stares at the thorns, oblivious of the rose.” – Kahlil Gibran

Alzheimer's love is different for each person | Alzheimer's Reading Room

By Marie Marley
Alzheimer’s Reading Room

John is distraught when he visits his wife, Jean. First of all, he finds the facility per se depressing.

While walking to his wife’s room, he passes several residents sitting in wheel chairs. Most are either staring into space or else their heads are hanging down and they appear to be dozing. What a waste of human life, he thinks.

Worse still is his wife’s condition. She can’t bathe or dress herself. She needs help eating. She carries a baby doll around with her everywhere she goes. She acts as though it’s a real baby. He has tried and tried to convince her it’s just a doll, and he’s tried to get her to give it up. All to no avail. John sees only thorns everywhere he looks.

Come Back Early Today A Memoir of Alzheimer's Care

Jill is another regular visitor to the facility. Her mother, the past president of a major university, is in a wheel chair and can often be found playing Bingo, which she can’t play unless one of the aids helps her. Her mother’s other favorite activity is the sing-alongs held every Tuesday and Thursday. Most days she doesn’t even recognize Jill.

Jill’s reaction to the situation, however, is very different from that of John. Sometimes Jill arrives during the Bingo game and sits beside her mother as she’s playing. Instead of thinking how much her mother’s mental capacity has declined, she notes that her mother has a smile on her face. Jill is so happy that there are still things her mother enjoys.

Although her mother usually doesn’t recognize her, it’s obvious that she enjoys Jill’s visits. As far as the diapers her mother wears, Jill isn’t upset by them. All babies wear them and that isn’t depressing to anyone.

To a great extent, our attitudes about long-term care facilities and people with dementia influence how we view them.

We must look at the roses and let the thorns pass into the background.

If we are in denial and try to insist that our love one talk and behave like a ‘normal’ person, we will be miserable every time we see the person.

If we focus on what our loved one can’t do rather than what he or she still can do, visiting will be painful. If we focus on the thorns instead of the roses our distress will know no end.

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Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Her website ( contains a wealth of information for Alzheimer’s caregivers. She is also the co-author (with Daniel C. Potts, MD, FAAN) of the forthcoming book, “Finding Joy in Alzheimer’s: New Hope for Caregivers.’

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Original Source of this article: Alzheimer’s Reading Room ,

8 Dementia Care Tips When Patient Has Problems Sleeping

I once worked with a woman who had odd sleeping habits. She had Alzheimer’s disease and had a lot of difficulty staying asleep all night.

She had Alzheimer’s disease and had a lot of difficulty staying asleep all night | Alzheimer's Reading Room

By Rachael Wonderlin
Alzheimer’s Reading Room

Thanks to my challenging hours during graduate school, the only time I could work was at night. I’d go to her house around 8:00 PM, help her get ready for bed at 10:00 PM, and then go to sleep myself.

Throughout the night, she would wake up maybe two to five times. On a five-time night, it was tough. She had a motion sensor under her bed that would sound when her feet hit the floor. Ding, dong. Ding, dong. It was loud and sounded like a doorbell. Ding, dong.

I can still hear the noise in my head when I think about it, because it always shook me out of sleep in the most dramatic way.

In fact, it was tough to sleep there at all. My brain was on high alert, even as I dreamed: would she need my help tonight?

How often?

I tell you this story because I have a lot of respect for caregivers, especially those that provide 24-hour care for their loved ones. I also wanted to tell this story because I have personal experience caring for someone who is struggling with sleep.

The way to solve any challenging dementia behavior is this: find the root cause of the issue. 

Dementia can cause a change in sleep patterns because of the way the brain is affected. There are ways to combat this, but first here are some questions you need to ask yourself:

  1. What types of medications is he on? Some medications can completely alter a person’s sleep cycle. Talk to your doctor about trying a vacation from some of his medications, or changing some of his prescriptions to see if it helps.
  2. When did this pattern start? What happened immediately prior to the change in sleep cycle?
  3. Is he depressed? Depression can have a profound effect on sleep. Many people who are severely depressed will sleep during the day and wake up at night.
  4. What did your husband do during the day in years past? Did he ever work third shift? He could be remembering this time in his life and feeling as though he has to be up for work.
  5. What does he do while he’s awake at night? Is he just watching TV and snacking, or is he trying to run errands?
  6. Does he seem aware that it is nighttime? If he seems confused about this, there are clocks that are made for people with dementia. The clock is big, bright, digital, and states that it is nighttime.
  7. Does he want to be up at night? I wonder if he’s feeling overwhelmed by everything that goes on during the day. Perhaps he finds nighttime more manageable and quieter.
  8. Have you tried environmental cues, such as leaving window shades open? If he notices that it is dark outside, maybe he will want to sleep.

Try to get your husband back on a more normal sleep schedule. Napping during the day can help solve this issue. See if he is able to wake up in the morning and then nap at the same time every day.

People with dementia are very schedule-oriented.

If he is able to nap for short periods during the day, perhaps he will still be able to fall asleep at night.

There are many ways to solve behavioral needs of people with dementia.

The first thing to do is to search for the root cause of the problem.


*Rachael Wonderlin is the Director of Memory Care at Blue Harbor Senior Living, and specializes in long term dementia care. She graduated from the University of North Carolina at Greensboro with a Master’s degree in Gerontology. She writes and answers questions from readers at Dementia By Day.

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Excerpt from a pervious article written by Rachael Wonderlin.

Don’t Want to Lie to a Person Living with Dementia, Why Not Embrace Reality Instead

If there’s one is one lesson that you can walk away with today after reading this article, it is this phrase:
“Embrace his or her reality.”

I once overheard a nurse arguing with a man who had dementia.

“That’s NOT your wife, you can’t come in here while we are getting Mildred *changed,” she said.

The more the nurse told him this, the more frustrated and angry he became.

“That is my wife. That’s my wife, let me in there!” he said, slamming his walker into the door.

Granted, Mildred was not actually his wife, but that was not the point. I walked up and put my hand on his shoulder. “Hey, let’s wait out here for her.

She’ll be ready soon,” I assured him.

He calmed down immediately and sat with me. I looked to the nurse and suggested that she avoid arguing with him. She became defensive and stated,

“I don’t want to lie to him.”

If there’s one is one lesson that you can walk away with today after reading this article, it is this phrase:

“Embrace his or her reality.”

Read the article here

The goal of the Alzheimer’s Reading Room is to Educate, Empower, and sometimes Entertain Alzheimer’s caregivers, their families, and the entire Alzheimer’s community.

At its core the Alzheimer’s Reading Room is about helping members of the Alzheimer’s and Dementia Community understand, cope, and communicate with persons living with Alzheimer’s and Dementia.

The Alzheimer’s Reading Room is currently the number one source of information for caregivers about Alzheimer’s, dementia, memory loss, and related health and life news on the Internet.
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Caregiver Jobs Available Nationwide and Increasing: Apply and Refer-a-Friend to Assist Seniors Near You

Caregivers for seniors are needed.  While 10,000 seniors turn age 65 every day, this is not the only reason more professional senior caregivers are need for part-time and full-time job openings.  Social demographics have changed in the U.S.A. and couples are having children later in life and pursuing activities and careers which allow them to relocate from the town where they grew up.

Seniors are living longer.  A child born in the U.S.A. today can plan to live to age 100.  This also means many people will choose to relocate when they reach retirement age.  When our lifespan was just 75 years old (when Medicare was created 50 years ago, the age of 65 was chosen because most people would only live another 10 years).  Now that we have another 35 years to live after we retire, seniors are moving to new locations to enjoy their retirement years.

Caregivers are needed part-time when a senior may be recovering from a major surgery or rehabilitating from a hip replacement or a fall.  Sadly, Alzheimer’s disease has become a growing diagnosis and will continue to grow as the population of older Americans grows.

Another reason more caregivers are needed can be understood by reviewing just the care needs for those seniors with Alzheimer’s disease.

Alzheimer’s Disease in the U.S.A.

  • 1 in 9 Americans age 65 and older (11%) has Alzheimer’s disease
  • About 1/3rd of people age 85 and older (32%) have Alzheimer’s disease
  • 81% of people who have Alzheimer’s disease are age 75 or older
Remember, our former President Reagan needed caregiving services for 10 years while living with Alzheimer’s disease.
Caregiverlist advocates for quality senior care with caregiver training tools (online) and an interactive caregiver hiring platform for senior care companies. 

Senior caregivers or anyone with a caring personality who would like to become a senior caregiver may apply for a caregiving job on Caregiverlist’s Career Center and be considered for part-time and full-time caregiver jobs and C.N.A. jobs in their area. If you know someone who would enjoy working as a caregiver, you may refer them to Caregiverlist’s Refer-a-Friend program and be entered to win free caregiver training.
Retirees who are looking for a part-time income along with doing work that can be very fulfilling, can also apply for a senior caregiving job as a companion caregiver.  Read about the caregiver job description and think about people who may be a good fit as all senior care companies are constantly seeking trustworthy individuals to train and hire as caregivers. These caregivers do not do hands-on care assistance (such as assisting with bathing, toileting, dressing, and assisting bed-ridden patients). Instead, they are companions for seniors who may be experiencing memory loss or loneliness. These caregivers keep the senior’s day on track and sometimes escort them to appointments and activities.
The labor department has targeted senior care as the top industry for employment growth in the next decade and when you see all of the different senior care options, this prediction makes sense.

Source: Caregiverlist –

Dying from Dementia — Dementia Suffering Often Unnecessary

This discussion and research on Dying with Dementia and the unnecessary care that often accompanies the late stages of dementia is worth discussing and considering.

By Alzheimer’s Reading Room

Since individuals with advanced dementia cannot report their symptoms, these symptoms often are untreated

This topic is often overlooked and avoided until it is too late. I believe these issues should be considered, and when possible, discussed in support groups. This information is worth sharing and discussing with family members.

Since individuals with advanced dementia cannot report their symptoms, these symptoms often are untreated, leaving them vulnerable to pain, difficulty breathing and various other conditions. 

We shouldn’t allow these people to suffer. We should be providing palliative care to make them more comfortable in the time they have left. 

As a teenager, I had the unfortunate but ultimately career-shaping experience of watching my maternal grandmother decline from Alzheimer’s disease.  

She resided in a nursing home, where her final months were marked by repeated courses of antibiotics for infections and the use of restraints or medications to control her agitation before she died from one last infection. 
Seeing my grandmother in that state was so distressing that my mother eventually stopped taking the grandchildren to visit. My grandmother had little in the way of either comfort or company toward the end.  

~Greg A. Sachs, M.D.

Choices, Attitudes and Strategies for Care of Advanced Dementia at the End-of-Life

The clinical course of advanced dementia, including uncomfortable symptoms such as pain and high mortality, is similar to that experienced by patients of other terminal conditions, according to scientists at the Institute for Aging Research of Hebrew SeniorLife, an affiliate of Harvard Medical School.

The study, published in the New England Journal of Medicine, is the first to rigorously describe the clinical course of advanced dementia, a leading cause of death in the United States. Previous studies suggest that patients with advanced dementia are under-recognized as being at high risk of death and receive suboptimal palliative care, which aims to improve the comfort of terminally ill patients.

“Dementia is a terminal illness,” says lead author Susan L. Mitchell, M.D., M.P.H., a senior scientist at the Institute for Aging Research. “As the end of life approaches, the pattern in which patients with advanced dementia experience distressing symptoms is similar to patients dying of more commonly recognized terminal conditions, such as cancer.”

The study underscores the need to improve the quality of palliative care in nursing homes to reduce the physical suffering of patients with advanced dementia, and to improve communication with their family members. “This will help to ensure that patients and families understand what to expect in advanced dementia, so that appropriate advance care plans can be made,” says Dr. Mitchell.

In an accompanying editorial in the New England Journal of Medicine, Greg A. Sachs, M.D., of the Indiana University Center for Aging Research, says Dr. Mitchell’s paper “moves the field forward in major ways with regard to both prognosis and the terminal nature of advanced dementia” and should be used to inform public policy about palliative care for patients with the disease.


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The “Choices, Attitudes and Strategies for Care of Advanced Dementia at the End-of-Life,” or CASCADE, study prospectively followed the clinical course of 323 nursing home residents with advanced dementia living in 22 Boston-area nursing homes for up to 18 months. At the final stage of the disease, patients had profound memory deficits such that they could not recognize close family members, spoke fewer than six words, and were non-ambulatory and incontinent.

Over the course of the study, 177 patients died. The researchers found that the most common complications were pneumonia, fevers and eating problems, and that these complications were associated with high six-month mortality rates. Uncomfortable symptoms, including pain, pressure ulcers, shortness of breath, and aspiration, were also common and increased as the end of life approached.

Dr. Mitchell, an Associate Professor of Medicine at Harvard Medical School, said that she and her team found that while 96 percent of the patients’ health-care proxies believed that comfort care was the primary goal of care for their loved one, nearly 41 percent of patients who died during the study underwent at least one intervention, including hospitalization, an emergency room visit, intravenous therapy, or tube feeding, in the last three months of life. However, patients whose health-care proxies understood the clinical course of the disease were less likely to receive aggressive treatment near the end of life.

“Many of the patients in our study underwent interventions of questionable benefit in the last three months of life,” says Dr. Mitchell. “However, when their health-care proxies were aware of the poor prognosis and expected clinical complications in advanced dementia, patients were less likely to undergo these interventions and more likely to receive palliative care in their final days of life.”

At the beginning of the study, 81 percent of the proxies felt they understood which clinical complications to expect in advanced dementia, yet only one third said that a physician had counseled them about these complications.

Currently, more than 5 million Americans suffer from dementia, a number that is expected to increase by almost three-fold in the next 40 years. A recent study by Alzheimer’s Disease International estimates that the number of people with dementia worldwide will exceed 35 million by 2050. Dementia is a group of symptoms severe enough to interfere with daily functioning, including memory loss, difficulty communicating, personality change, and an inability to reason. Alzheimer’s disease is the most common form of dementia.

“A better understanding of the clinical trajectory of end-stage dementia is a critical step toward improving the care of patients with this condition,” says Dr. Mitchell. “This knowledge will help to give health-care providers, patients and families more realistic expectations about what they will confront as the disease progresses and the end of life approaches.”

The CASCADE study was funded by the National Institutes of Health.

Scientists at the Institute for Aging Research conduct rigorous medical and social studies, leading the way in developing strategies for maximizing individuals’ strength, vigor and physical well-being, as well as their cognitive and functional independence, in late life. Hebrew SeniorLife, an affiliate of Harvard Medical School, is a 106-year-old organization committed to maximizing the quality of life of seniors through an integrated network of research and teaching, housing and health care.

Original content +Bob DeMarco , the Alzheimer’s Reading Room
Original Source of this article: Alzheimer’s Reading Room ,

Compassion & Choices Capitol Hill Briefing Thursday October 29th

Senior care involves assisting seniors with terminal illnesses.  While hospice care allows families to prepare better for the end, sometimes there is a need for a way to die with dignity when suffering from certain illnesses.  Anyone who has witnessed someone dying this way understands the movement that has gained momentum to help authorize medical aid in dying. Caregivers who have heard death rattles from a dying patient are changed forever by the experience and many are filled with compassion for how to better assist.

Compassion & Choices is the organization championing access to medical aid in dying. Oregon and West Virginia have passed legislation and bills are pending in another 25 states and the District of Columbia. California’s governor recently signed a bill to also make this available in California. 

Caregivers who advocate for this right may call their U.S. Senator and Representative and ask them to attend Compassion & Choices’ Capitol Hill Briefing:

Compassion & Choices Capitol Hill Briefing in Washington, D.C.

Thursday, October 29th at 2 p.m.

2226 Rayburn House Office Building

This briefing will include remarks from Dan Diaz, husband of Brittany Maynard, who recently spoke here in Chicago at Chicago Idea’s Week.  He and his wife had to relocate to Oregon as her brain terminal progressed, in order to allow her the option of dying with dignity.  A move right before death is not something that most of us would welcome. Many medical doctors and registered nurses are champions for this legislation as they understand how both your body and personality can change with certain diseases as your organs are shutting down. The states that are passing these compassion laws do require individuals to be approved before receiving the medications.

Dr. David Grube, Compassion & Choices’ national medical director and a few board members will also speak.

Seniors and caregivers who want to support this right to be available nationwide may contact their state Senator and their local Congressman to let them know they should attend too.

RSVP to Attend

Source: Caregiverlist –

Caregivers Operate at a Very High “Station In Life”

While operating as a caregiver for someone living with Alzheimer’s, or any type of dementia, we are performing at a very high “station in life”.

We are performing at a very high "station in life"

Caregiving is often arduous and burdensome. At times it can be heartbreaking. But the ordinary acts we perform each day can bring meaning and purpose to our lives.

By Bob DeMarco
Alzheimer’s Reading Room

It is my belief that we are all searching for meaning in our lives. I can think of few things as meaningful as caring for someone who needs us so much.

If allow yourself to think and feel, if you open your mind, you might come to the realization that these many arduous tasks we perform are not only necessary, they give a higher quality of life to the person for whom we are caring.

I remember when I first wrote candidly here in the Alzheimer’s Reading Room about giving my mother a shower. Many were surprised. Most men commented that they didn’t know if they could do it.

For me, it was a necessary act of kindness and love. It was an important act because good hygiene is a necessary act of good health.

When I finished washing my mother’s hair and giving her a shower she looked squeaky clean. I did a good job. My mom seemed happier. This was easy for me to understand. I often feel good, and happy, after giving myself a good cleaning. Don’t you? Don’t you feel better?

I wrote here candidly about the dreaded bowel movement. It included the fact that I had to clean up poop. You might think I was horrified, many assumed I was. I was not. For me, it was a necessary act of caring. An act of love and kindness. You can read about it here –

I recently read on Facebook about a women who was finding it very difficult to wipe her mom.

She wanted to teach her mom who was living with dementia how to wipe her own butt. She thought it would bring dignity to her mom. She failed to realize that this ordinary act of caring was necessary.

Perhaps it would have helped if she thought about the fact that she was keeping her mother free of rashes, sores, and infection. All of which can be life threatening to a person living with Alzheimer’s.

She was performing a necessary act of kindness and love. She is a very loving daughter.

Caring is an act of love and kindness. Let me emphasize this.

Caring is an act of love and kindness.

For these reasons alone we are operating at a very high “station in life”.

For those who doubt their own great accomplishment each day I ask, “if not you, who could do it”.

I believe we are called to care. We are often the ONE. The only one.

I believe caring does and will bring meaning to you life. Allow yourself to feel the happiness and Joy of your accomplishment.

As a caregiver you embark on what just might be the most important mission of your entire life.

When this mission ends you will have then have accomplished more than you ever could have imagined.

You will have loved and cared for another human being in a way that few you understand.

Allow yourself to understand how wonderful you really are.

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The Seven Stages of Alzheimer’s

About the Author

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10 Tips for Communicating with an Alzheimer’s Patient

Do not argue with them. It gets you nowhere…

10 Tips for Communicating with an Alzheimer's Patient | Alzheimer's Reading Room

Ever feel like your loved one is ignoring you or that you just weren’t getting through to your loved one? Try some of these tips to see if they help.

By Carole Larkin
Alzheimer’s Reading Room

Tips for communicating with a mid-stage (or later) Alzheimer’s patients.

  1. Make eye contact. Always approach them face-to-face and make eye contact. Use their name if you need to. It is vital that they actually see you and that their attention is focused on you. Read their eyes. Always approach from the front as approaching and speaking from the side or from behind can startle them.
  2. Be at their level. Move your head to be at the same level as their head. Bend your knees or sit down to reach their level. Do not stand or hover over them – it is intimidating and scary. They can’t focus on you and what you are saying if they are focused on their fear.
  3. Tell them what you are going to do before you do it. Particularly if you are going to touch them. They need to know what is coming first so that they don’t think that you are grabbing them.
  4. Speak calmly. Always speak in a calm manner with an upbeat tone of voice, even if you don’t feel that way. If you sound angry or agitated, they will often mirror that feeling back to you and then some.
  5. Speak slowly. Speak at one half of your normal speed when talking to them. Take a breath between each sentence. They can not process words as fast as non-diseased people can. Give them a chance to catch up to your words.
  6. Speak in short sentences. Speak in short direct sentences with only one idea to a sentence. Usually they can only focus on only one idea at a time.
  7. Only ask one question at a time. Let them answer it before you ask another question. You can ask who, what, where and when, but NOT why. Why is too complicated. They will try to answer, fail and get frustrated.
  8. Don’t say “remember”. Many times they will not be able to do so, and you are just pointing out to them their shortcomings. That is insulting, and can cause anger and/or embarrassment.
  9. Turn negatives into positives. For example say “Let’s go here” instead of “Don’t go there”. Be inclusive and don’t talking down to them as if they were a child. Respect the fact that they are an adult, and treat them as such.
  10. Do not argue with them. It gets you nowhere. Instead, validate their feelings, by saying” I see that you are angry (sad, upset, etc…). It lets them know that they are not alone and then redirect them into another thought. For example “It sounds like you miss your mother (husband, father, etc…). You love them very much, don’t you? Tell me about the time…” Then ask for one of their favorite stories about that person).

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Carole Larkin MA,CMC,CAEd,QDCS,EICS,
is a Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. ThirdAge Services LLC, is located in Dallas, TX.

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