Communication and Alzheimer’s/Dementia

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One of the most difficult things for families and care giver’s is the change in communication that comes with the progression of Alzheimer’s/Dementia (A/D). Persons with A/D are no longer able to perceive the world as we see it, yet we continue to try to converse and make them understand in the same old ways, creating frustration on both sides of the conversation.

One of the best things I have learned is to stop asking questions!

“What did you do today?

“What did you have for supper?”

“Where do you want to go?”

“Would you like a cup of coffee?”

All these questions create a challenge for those with A/D. Now they have to remember what the question was from the beginning to the end. Then they have to ask themselves questions:

“What is today?”

“Did I eat?”

“Where am I now?”

“Am I supposed to make the coffee?”

This creates turmoil within themselves as they try to determine what they are supposed to say, which often leads to the safest answers possible:

“Nothing.”

“I didn’t eat.”

“I don’t want to go.”

And of course, the safest answer of all, the one that will always protect them, the reflexive,                                  “NO”

Instead learn to make positive statements:

“It looks like you had a great day today!”

“Supper is yummy! You only have a little bit of corn left and you are finished!”

“Come with me, I have something to show you.”

“I’m going to have a cup of coffee. I made you one just as you like it.”

It is not easy to learn to converse in statements, but with practice it will lead to less stress for all parties involved.

One other quick tip is: Please don’t try to correct the person with A/D. Just be present in their reality, accepting where they are, in their world, at this moment, and enjoying wherever the interaction takes you!

The Rev. Deborah Hanson, Deacon, RN

Owner: Landmark Memory Care

www.landmarkmemorycare.com

720.537.9355

 

 

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Contented Dementia

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By: Cyndy Luzinski first published 12/22/16, revised 6/1/2017

Dad was a brilliant researcher and fisherman, but he was an even better father.  So, when he shared his concern with me several years ago that his thinking was foggy, I started to do some research of my own.  I realized we were headed on the dementia journey, not knowing at the time where the journey would take us.  With divine timing and circumstances, three weeks after Dad shared his frustration with me, I was sitting down for tea in London with Penny Garner, the woman who developed the “Contented Dementia” approach used in the UK for dementia care.    (© CONTENTED DEMENTIA TRUST )

I learned from Penny that the horrid image of the rocking chair occupied by an old man shutting out the world, with his eyes closed and his arms folded across his chest rocking back and forth did not have to be the reality of dementia.  Penny explained that the primary difference between people with dementia which affected their memory now and the people you knew them to be 20 years ago is in their ability to efficiently learn new information.  Using the non-medical analogy of the SPECAL®  Photograph Album,   Penny shows how our minds, specifically our memory systems work.  The analogy helps me understand that the facts of new information are not stored in the mind of someone with dementia; it explains why feelings become increasingly more important than facts for the person with dementia; and it explains why cognitive loss makes emotional and spiritual needs more apparent.

Access to recent facts is required in order to use “common sense.”  People with dementia may not have access to those recent facts, so care partners who are humble enough to realize that, use what Penny refers to as “SPECAL® sense.” (S-P-E-C-A-L—SPecialized Early Care for ALzheimer’s).   SPECAL® sense begins with living by 3 Golden Rules:  1. Don’t ask direct questions (Learn to rephrase questions into statements that encourage responses rather than demand responses.)  2. Learn from the expert (The person with dementia is the expert.  Pay attention to the questions he or she asks because that tells you what is important to him/her.   3. Don’t contradict.  (Don’t correct or criticize.  If the person with dementia needs to use facts that are 30 or even 50 years old in order to bring context to what he or she is feeling today, we need to be humble enough to go along with it so that we don’t cause unnecessary anxiety.  Being kind is more important than being right.)

The Contented Dementia approach is simple and effective. However, many other person-centered and relationship-based philosophies and approaches exist for dementia care.  What the good ones have in common is this: We cannot provide person-centered or relationship-based care without investing time to KNOW the person.

Hopeful research is underway across the globe for cures and medical treatments for various causes of dementia.  Until cures and more effective preventive and maintenance treatments are found, we who are serving as care partners or senior health care professionals, CAN learn and practice the 3 Golden Rules NOW to provide the greatest contentment and joy for those living with dementia.  WE are the ones who need to change.  WE are the ones who need to study what responses produce the greatest sense of well-being.  WE are the ones who need to know who our person with dementia was at his/her finest hour.  WE are the ones who need to communicate to everyone who comes in contact with our person, key information they need to help the one with dementia make smooth transitions throughout the day, indeed, throughout a lifetime.  WE are the ones who can “make a present of the past” ® to help our friends and loved ones with dementia thrive.

Cyndy Luzinski, is an advanced practice nurse and dementia practitioner who has a passion for helping people with dementia and their care partners live with hope and joy. She facilitates memory cafes and a dementia care partners’ support group in Northern Colorado.  She is the founder of the volunteer initiative and non-profit organization called “Dementia-Friendly Communities of Northern Colorado.®”  This initiative leverages existing community resources and activities and provides training and support so that people walking the dementia journey, in our communities, don’t have to walk alone.

As a member of Eldercare Network, Cyndy will be presenting on person-centered care approaches and Contented Dementia strategies at the Fort Collins Senior Center, July 13 5:30-6:30, and at the Loveland Library, July 20 5:30-6:30 pm.

For more information see DementiaFriendsNoCo.org or the “Dementia-Friendly Communities of Northern Colorado®” Facebook page.

 

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Family Experience Satisfaction Survey Results

Front Range Hospice and Palliative Care, your leader in Making Best Days Possible and providing Legendary End of Life Care once again comes out on top. Front Range Hospice and Palliative Care has been conducting post death family experience satisfaction surveys for years (see the image below for the most recent available data).

If you would like more information about Front Range Hospice and Palliative Care, or if you would like to see our Family Experience Satisfaction Survey Results on an ongoing basis please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com.

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National Hospital Week

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National Hospital Week celebrates hospitals and the women and men who support the health and well-being of their communities through dedication and compassionate care from the heart.

In 1921, U.S. President Warren G. Harding declared the first National Hospital Day. He picked May 12, Florence Nightingale’s birthday, to honor the famed nurse who set initial standards for hospital quality during the Crimean War of 1854.

President Harding declared the special day as an occasion to open hospitals across the United States and Canada to allow staff to educate visitors about medical examination and treatment and to distribute health care literature and information.

This publicity campaign was conceived by Matthew O. Foley, managing editor of the Chicago-based trade publication Hospital Management, in the wake of the 1918 Spanish flu pandemic.

The devastating epidemic killed an estimated 50 million people worldwide, including more than 675,000 Americans.  Foley sought to rebuild trust in the city’s hospitals as well as to draw attention to broader crises facing health care. A May 1921 Canadian Medical Association Journal editorial outlined those problems:

War influenced day’s focus

National Hospital Day 1945 addressed a different set of challenges – a country still reeling from the Great Depression and still at war with Japan; victory in Europe was declared May 8, 1945. San Francisco Mayor Roger Lapham proclaimed National Hospital Day as a date to honor volunteer and professional workers for what the mayor called “the splendid record for health in San Francisco during our fourth year of war”.

Hospital Day becomes Hospital Week

In 1953, National Hospital Day was expanded to National Hospital Week to give hospitals more time for public education about medical care.

Join us and take this year’s National Hospital Week as an opportunity to thank all of the dedicated individuals – physicians, nurses, therapists, engineers, food service workers, volunteers, administrators and so many more – for their contributions.

 

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National Nurses Week

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The Nightingale Pledge, also known as the Nursing Hippocratic Oath,

“I solemnly pledge myself before God and presence of this assembly;

To pass my life in purity and to practice my profession faithfully.

I will abstain from whatever is deleterious and mischievous and will not take or knowingly administer any harmful drug. 

I will do all in my power to maintain and elevate the standard of my profession and will hold in confidence all personal matters committed to my keeping and family affairs coming to my knowledge in the practice of my calling.

With loyalty will I endeavor to aid the physician in his work, and devote myself to the welfare of those committed to my care.”

Nursing is the nation’s largest health care profession with more than 3.1 million nurses practicing nationwide. Despite its large size, many more nurses are needed into the foreseeable future to meet the growing demand for nursing care. Nurses comprise the largest single component of hospital staff, are the primary providers of hospital patient care, and deliver most of the nation’s long-term care, home care and hospice care.

Most health care services involve some form of care by nurses. Although 62.2 percent of all employed RNs work in hospitals, many are employed in a wide range of other settings, including private practices, public health agencies, primary care clinics, home health care, outpatient surgicenters, health maintenance organizations, nursing school-operated nursing centers, insurance and managed care companies, nursing homes, schools, mental health agencies, hospices, the military, and industry. Other nurses work in careers as college and university educators preparing future nurses or as scientists developing advances in many areas of health care and health promotion.

Though often working collaboratively, nurses do not simply “assist” physicians and other health care providers. Instead, they practice independently within their own defined scope of practice. Nursing roles range from direct patient care to case management, establishing nursing practice standards, developing quality assurance procedures, and directing complex nursing care systems.

With more than four times as many nurses in the United States as physicians, nursing delivers an extended array of health care services, including primary and preventive care by advanced, independent nurse practitioners in such clinical areas as pediatrics, family health, women’s health, and gerontological care. Nursing’s scope also includes care by clinical nurse specialists, certified nurse-midwives and nurse anesthetists, as well as care in cardiac, oncology, neonatal, neurological, and obstetric/gynecological nursing and other advanced clinical specialties.

Over the years, the field of nursing has maintained the highest standards with a patient center focus. A recent survey from Gallup finds that nursing is the most trusted profession in the United States, with respondents rating nurses highest for honesty and ethics. The telephone survey of 805 adults gauged respondents’ attitudes toward a number of popular professions. This year’s rating is the highest since 1999 when the profession was first included in the poll. The one year nurses didn’t top the list? It was 2001, after the terrorist attacks of 9/11, when firefighters were included for the first and only time and scored higher. Gallup conducts the telephone survey in late November each year.

So, before this year’s survey begins all of us at Front Range Hospice and Palliative Care wish all nurses a career filled with compassion, growth and above all self-enrichment. Happy Nurses Week!!!!

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It’s National Volunteer Week

58f79bccd3d2a.imageBy Victor Montour

President Richard Nixon established National Volunteer Week with an executive order in 1974, as a way to recognize and celebrate the efforts of volunteers. Every sitting U.S. president since Nixon has issued a proclamation during National Volunteer Week (as have many U.S. mayors and governors).

Since then, the original emphasis on celebration has widened; the week has become a nationwide effort to urge people to get out and volunteer in their communities. Every April, charities, hospitals, and communities recognize volunteers and foster a culture of service.

Join your peers nationwide during the 2017 National Healthcare Volunteer Week, April 23-29, in celebrating and recognizing your volunteers’ efforts to advance your organization.

This is an opportunity for you to recognize the integral role volunteers play in advancing patient engagement and quality care. In an effort to showcase the roles of volunteers at Front Range Hospice and Palliative Care, I reached out to our volunteers and asked them questions to help me get a better picture of their role and the complexity of it.

Like many people, Rita Boreiko decided to volunteer with hospice after a personal encounter with the services, for a family member in Canada. Rita noted the systems are rather different there in Canada, the atmosphere of caring and comfort around the patient’s end of life was important, and Rita wanted to help perpetuate that for others. Rita has always had an affinity for older people, appreciating their years of experience and perspective.

Rita went on to tell us about one of her most rewarding experiences while volunteering in hospice. This patient was essentially unable to speak or function above the level of a young child. Every time Rita saw him, she brought a picture book which dealt with topics that had been of interest to him as a healthy adult, and he appeared to enjoy Rita’s discussion of them with him, the patient even attempting to say a few words. After a few visits, the patient would see Rita approaching the common area where he sat, and would wave at her and smile. The staff at the facility were astounded, and said that he hadn’t recognized anyone for a long time. His obvious anticipation was a special reward to Rita, telling her that she was bringing some happiness into his life.

Rita would tell anyone considering volunteering with hospice to look carefully at their motivation and personality, what they hope to accomplish, and what they expect in return, in terms of what they need in order to feel that their work and time are worthwhile. Rita says in many cases, thanks are not able to be expressed either verbally or by actions, and there are numerous times when volunteer visits appear not to be wanted.

Rita goes on to say, sometimes the volunteer is the only available sounding board for complaints, and you just have to listen patiently and try to understand how the patient could be feeling. Rita also found that a volunteer must be comfortable with silence, allowing the patient to choose the time and manner of interaction with the understanding every patient and every visit has to include the acceptance that the relationship you’re developing is temporary, and at the end of it there will inevitably be sadness and loss. This is particularly true for longer-term patients whom the volunteer can come to know quite well. All that being said, Rita has found that volunteering has taught her many things: about herself, about listening, about acceptance, about life – though not really about death. And it is a rewarding and worthwhile experience.

Cecilia Cervajal was part of a spiritual group many years ago which was looking into volunteering projects within the Denver-Boulder area. Working with this group Cecilia started her volunteering in hospice. Cecilia finds it most rewarding to be present with those patients who are actively dying, supporting her patients, families and loved ones with death itself.

Cecelia would tell anyone who is considering volunteering for a hospice to know it is a commitment worth making. She says you will care for others, yourself and learn the love and compassion that comes with dying.

Volunteers are the heart of Front Range Hospice and Palliative Care. They work as a part of the palliative care team to provide a special kind of compassion for our patients and their families. Whether it is offering a unique presence, offering a listening ear, providing grief support, or supporting the administrative tasks of our hospice, the time that our volunteers give to Front Range Hospice allow our hospice to provide exceptional care to our patients and their families.

Front Range Hospice and Palliative Care is always looking for caring loving volunteers to join our team. If you or someone you know is interested in volunteering with Front Range Hospice and Palliative Care please call 303-957-3101 or 970-776-8080, you can also email us at info@frhospice.com.  

 

 

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The Cost of Failing to Plan

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By: Susie Germany

Every day in our office we see the cost of failing to plan for emergencies, end-of-life decisions and for navigating difficult family dynamics when there is an unexpected illness or death in a family.

According to a Gallup Poll in May, 2016, it is estimated that over 56% percent of people in the United States do not have a will or any disability planning documents, such as Medical Durable Powers of Attorney, General Durable Powers of Attorney or Advanced Directives or Living Wills.

Today with widespread internet research for everything from purchasing a car, to diagnosing an illness, there is a general belief that people can just download a form for any legal need that may arise or plug in some basic information into a blank template to create an instant estate plan.

Estate planning is not just about documents.  It is not about filling in a blank.  It is really about communication with family, friends and loved ones about your wishes, meeting with an experienced attorney who specializes in issues pertaining to aging, illness and end-of-life, and getting meaningful, helpful advice about what documents need to be in place, specific to each individual’s situation.

Recently, I have seen advertisements online and on Facebook for online Will forms and prepaid legal plans and seminars where people can go and do their will themselves in a group setting.  What appears as a cost-saving venture, really can create a nightmare for a family.

Here is a recent example:  Fred, a 70 year old retired veteran was recently widowed.  His grandson Terry, offered to take Fred to a low-cost seminar at the local senior center where every attendee filled out a fill-in-the-blank will and powers of attorney.  The seminar was taught by an attorney and there were 27 attendees in the class.  The class was about two hours long.  The attorney did not meet with each individual personally, nor ask any in-depth personal questions.  Fred left the seminar with a signed and notarized Will, a Medical Durable Power of Attorney and a General Durable Power of Attorney, all naming Terry as agent and personal representative of his estate.

Three months later our office was contact by Fred’s neighbor.  He called because he saw our sign and was concerned because he had just been over at Fred’s house and noticed something was amiss.

The neighbor had not seen Fred in a few months and stopped by to say hello.  When he went inside the house, he noticed the house was a mess, and there were dirty dishes all over the kitchen.  The neighbor thought this was odd, because Fred and his wife had been immaculate housekeepers.  When the neighbor suggested they have coffee on the porch, Fred’s grandson appeared from the basement.   Fred seemed very distracted so the neighbor then asked Fred to come next door to his house to help him with a project.

When the neighbor left the house with Fred, he noticed Fred seemed distracted and had lost a lot of weight since he last saw him.  He offered Fred a snack and some coffee and as they spoke the neighbor learned that since Velma, his wife had passed, their grandson, Terry, had moved in to help him.

However, Fred seemed concerned because he said he was worried, as he had recently done his Will and powers of attorney and now Terry had him sign over some papers adding Terry to the title of his house and his car.  Terry said that it was a good idea since Fred was getting his affairs in order it was also a good time to do this to “keep the government out of Fred’s business.”

Fortunately, the neighbor, a retired school teacher, became concerned and asked Fred if he was doing okay, getting enough to eat and sleep and how he was doing with his finances.  Fred said he wasn’t sure how his finances were because Terry was paying all his bills using his power of attorney.

After Fred went home, the neighbor called our office.  He then called Fred and encouraged him to come see us to review the documents he had signed at the seminar.  Needless to say, we discovered Terry had taken full control of Fred’s financial world.

In the end, it was discovered Terry had helped himself to over $50,000 of Fred and Velma’s hard-earned retirement funds and had managed to get Fred to sign his home and car over to Terry.  The documents Fred filled out that day at the seminar did not in fact leave Fred’s estate to his disabled granddaughter, as he had intended, but instead to Terry.

Once we were able to sort this all out with Fred, we encouraged him to evict Terry, which he did.  Terry was eventually charged with a felony, for theft from an at-risk adult.

The moral of this story is simple.  People do not go to attorneys to fill out a form.  They go to attorneys for guidance, advice and a plan.  This case was a perfect example of why someone should not do fill-in-the-blank estate planning or in a group format.  Fred did not fully understand what he was signing, what power he was giving to Terry, and the plan that was created did not do special needs planning for Fred’s granddaughter.  Instead, it gave an unemployed grandson who felt very entitled, the opportunity to take advantage of his grandfather financially.  Fred receiving no individual advice or counseling about his individual situation.  Had this occurred, possibly this theft and financial exploitation could have been avoided.

The old adage rings true.  If something seems too good to be true, it probably is.  Or if something feels too easy to accomplish, there is probably a reason for this.   Whereas it may have cost Fred upwards of $2000 to create a very sound estate plan that would have met his needs and planned for his disabled granddaughter, failing to plan cost him $50,000, ownership of his home, and a lot of legal fees and stress to clean up the mess once it was discovered what had occurred.

When in doubt, the assistance of qualified professionals is very valuable.

 

 

 

 

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