Holiday Help: Caregivers and Relatives with Dementia, Alzheimer’s Disease (Video 1:57 mins.)

The holidays are approaching fast. You’re a caregiver of a relative with dementia. You dread the upcoming love-hate festivities you have grown to expect during this busy time of year. You can really use some help.

According to University of South Carolina research involving caregivers of relatives with Alzheimer’s disease, the leading cause of dementia, there are three themes that may be prominent during your holiday season:

1) Becoming aware of your relative's symptoms

2) Trying to have one last normal holiday

3) Deciding how to handle holidays when your relative lives in an assisted living facility

Support is available from healthcare providers and others who can empower you during these joyous and sometimes stressful weeks of planning and celebration. In this video titled "Through the Holidays," Eve Moses, an educator with the Alzheimer’s Association, offers practical suggestions that can assist you in making happy holiday memories.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

Nursing Home, Long-Term Care Trends: Robotic Technology of the Future (Video 2:04 mins.)

                               

                                         Humanoid Service Robot REEM-B

Many people, particularly the graying pre-baby boomers, probably assume they won’t be around in the next 50 years. But with the speed of technological inventions nowadays, who really knows? Longevity continues to increase while fertility rates decrease. Social Security, Medicare, and Medicaid struggle with ongoing adjustments as demographics evolve into a future we can only predict. Fortunately, research from the University of Louisville School of Nursing in Kentucky gives us a glimpse into the future with results reported in "Nursing Clinics of North America.” These are the predicted trends for long-term care:

1) Future years will see a more diverse population with increased aggressive treatment of chronic illness.

2) Consumers of health care and their family caregivers will take more active steps to manage and coordinate their own care.

3) Housing trends that produce more senior-friendly
communities will encourage independent living rather than
seniors having to move into institutions.

4) Increased incentives for use of home and community-based care
will allow people to stay longer in their own homes in the community.

5) Technological advances, such as the use of robots serving as companions and assistants around the house, will also decrease
the need for institutional living.

This video gives a visual glance into the potential of robotics in the future with a demonstration by a humanoid robot built by Pal Technology. Robots like this could provide service at home to those who are unable to perform these actions themselves.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Hospice and Nursing Homes Blog

Hospice Volunteer Research: How? What? Why?

How do hospice volunteers learn about hospice volunteer opportunities?

What motivates them to start volunteering?

Why do they continue to volunteer?

These are open-ended questions that researchers at the University of Utah Department of Communication asked 351 hospice volunteers from 3 states. The following are the research findings:

1) Volunteers heard of opportunities through hospice and healthcare contacts, personal contacts, print and electronic sources, and other nonhospice organizations.

2) Volunteers were motivated mainly to be of service to others and because of a personal experience with the death of someone close.

3) The majority of volunteers continued to serve because they found it personally rewarding, wanted to help others, or both. Many continued because of the quality of their own hospice organization and staff members. Demographic influences were small.

These research results are particularly important to volunteer coordinators in recruiting and maintaining a productive volunteer staff. My video poem “Reflections of a Hospice Volunteer” expresses the win-win experiences of many volunteers:





Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

Dementia (Alzheimer’s) Caregiving with Understanding and Patience (Video 5:31 mins.)

Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. Many conditions can cause dementia, but Alzheimer’s disease is the leading cause. According to the Alzheimer’s Association, this disease, which advances at different rates, destroys memory and the ability to learn, reason, make judgments, communicate, and perform daily activities. Patients may also experience changes in behavior and personality such as anxiety and delusions.

Dementia is like a fluttering bee. As a hospice volunteer in nursing homes, I never knew when it would make honey or sting. There were times when residents with dementia were rude or violent. I have seen one slap a CNA’s (certified nursing assistant) face with such force I thought the CNA would fall over. To her credit, she took a deep breath and walked away while another CNA intervened.

Residents with dementia enjoyed talking about the past and embellishing their stories. Sometimes they remembered detailed incidents from childhood and minutes later couldn’t remember where they were. They needed encouragement when they became afraid. I tried to analyze what caused certain behaviors. Distractions helped them change their thoughts. Just like everyone else, they felt respected when their opinions mattered. I let them make some decisions, usually limiting the choices to two, so they wouldn’t feel overwhelmed.

Caregivers and other loved ones of those with dementia have to remind themselves often that patients’ repetitious questions and other unintentional behaviors are manifestations of the disease. This video titled “What is that?” reminds them (and all of us) to dig deeply into wells of themselves for understanding and patience.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Barriers and Benefits of End-of-Life Discussions with Doctors (Video 1:56 mins.)

Unless we are sure we will never experience physical death, we should all take advantage of preparing for the inevitable long before illness even comes. Not having productive discussions about end-of-life options hinders opportunities to make informed choices, including the choice of hospice care. However, patients’ reluctance to discuss end-of-life options is not the only barrier to their receiving hospice care. As this research shows, doctors can play an important role in delaying hospice discussions that provide benefits to patients and their families:

In a two-year experiment involving interviews with 215 elderly, terminally ill patients, Yale University Medical School researchers determined that factors most strongly associated with hospice discussions were clinicians' estimate of and certainty about patient life expectancy. Unfortunately, clinicians were unable to anticipate the deaths of a considerable portion of patients (40%). Results concluded that, ultimately, “patients' use of hospice, relies largely on clinician estimates of patient life expectancy and the predictability of disease course.” This is another reason why patients should finalize their end-of-life care wishes in writing well in advance. You can read more here about this research on determining hospice discussion.

What are benefits of having end-of life discussions with doctors? This video, which refers to a study at Boston’s Dana-Farber Cancer Institute, shows how these conversations with doctors promote dignified death journeys that help patients and their families.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”