Friday, May 25, 2012

Dementia Label Perceptions (Long-Term Care and Hospice Research, Alzheimer’s Video 3:41)

Many people have a need to label others. They struggle to ease the complexity of dealing with whole people by mentally putting them in a labeled box of who they think they are. They see someone for the first time and immediately begin to make judgments based on ethnicity, language, gender, religion, and other labels.

In work situations, labels can be particularly dangerous. A former school principal, I am aware that the most important influence for learning in any classroom is teacher expectations. The potential for doing damage to children is quite real when they are labeled negatively. Labels in the healthcare professions can also be damaging. Consider this research about perceptions resulting from labeling residents with dementia.

This study examined the labeling of nursing home and hospice residents, how it influenced employees’ perceptions, and how those perceptions could affect resident-caregiver interactions. Forty-three employees in various staff positions from a rural hospice and an urban nursing home were involved. Participants read a vignette based on a fictional resident’s behavior. They rated their perceptions of the behavior, indicating if and how they would report the event, and made recommendations for a possible course of action. Although the vignettes were the same, the fictional resident was labeled either as an Alzheimer’s resident in a specialized care unit or as a resident of a non-specialized long-term care unit.

Can you guess the results? If you guessed that the behavior of the resident labeled as an Alzheimer’s resident was perceived to be more problematic, inappropriate, and aggressive than the same behavior of the resident without the Alzheimer’s label, you would be right. Perceptions regarding a resident having Alzheimer’s disease were negative. Labels that interfere with impartial thinking of healthcare workers and others can be harmful to residents’ quality of life. The purpose of this post is to emphasize the importance of viewing people with dementia or any other disease as people first and not as disease labels.

In this video titled Live Outside the Stigma, Dr. Richard Taylor explains his personal life experiences and consequences of living with the myths and stigmas of dementia, probably the Alzheimer’s type.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Monday, May 21, 2012

Hospice and Palliative Care Veteran Services (Research, Video 4:46)

Nat was my most memorable patient with military service. Keeping a small American flag taped to his bed was his way of honoring those who returned from service in body bags or with physical and mental injuries. Although he had fought in Viet Nam years before we met as hospice volunteer and patient, his stories about his war experiences were as raw and real as any I have heard. He shared these reflections with me one day:

“I’ve seen and done things you couldn’t imagine. Some of them were horrible, I mean really horrible. Don’t ask me to tell you what they were, because I can’t talk about it. They say time heals all wounds, but it’s a lie. I left Viet Nam, but Viet Nam never left me. I carry it with me everywhere I go. All these years later, I still have nightmares like you wouldn’t believe. The doctor says it’s post-traumatic stress disorder or PTSD. I wake up shaking, gasping for breath with tears in my eyes. In my dreams, I’m always running hard, trying to escape. Sometimes my enemies are close enough for me to touch. I almost stop breathing to keep them from hearing me. I’m constantly thinking I’m not going to make it. Some nights they kill me before I wake up.” (Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes)

The number of veterans receiving hospice care continues to become a major area of expansion for the Veterans Health Administration. Research by the Department of Aging and Mental Health Disparities at the University of South Florida indicates that, of the millions of dollars being spent on veterans in hospice care, most of the funds are spent on younger veterans. Future trends indicate a growing need to allocate more funds for end-of-life care. Support and appreciation for the horrific sacrifices veterans have made are especially important during their death journeys.

This video titled Reaching Out to Those Who Served was produced by the Tennessee Hospice Association as part of a grant through the Veterans Administration and the National Hospice and Palliative Care Organization. It presents a detailed overview of hospice and palliative care services for veterans.


Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Tuesday, May 15, 2012

Hospice Diversity Outreach: Share Best Practices (Video .32)

Quality end-of-life care is an entitlement for everyone. That is the hospice philosophy. Unfortunately, hospice services continue to be underutilized nationally among various racial-ethnic groups and cultures. While several barriers to utilization have been studied, solutions always include the necessity of more diversity outreach by hospice organizations.

Hospice organizations must take proactive outreach roles in presenting the benefits hospice provides, while making all recipients of their services feel welcomed and respected. These are a few examples of outreach best practices:

1.  Having a committee to identify, educate, and serve populations not
     being served
2.  Changing photos on brochures and other media materials to reflect diverse populations
3.  Making cultural diversity an important part of staff development and
4.  Having 24/7 language interpretation services provided and included in media outreach
5.  Participating in racial-ethnic and cultural health initiatives, festivals, and events

I recently visited the Arab American National Museum in Dearborn, Michigan. As soon as the guide approached me, I said, “As-Salāmu`Alaykum,” probably with a Southern drawl. This is an Arabic greeting often translated as “Peace be with you.” It’s used among Muslims around the world. The guide immediately smiled widely, not because my Arabic language skills are good, but I think because he appreciated that I had made an effort to respect his culture. It may seem like a small thing, but my personal language “outreach” brought a new energy and acceptance to our meeting. That’s what diversity outreach can do.

In the video below titled Avow Hospice Speaks the Language of Care & Compassion, Avow Hospice sends a similar kind of message to their website viewers by addressing them in Spanish, French, Creole, and English, demonstrating that “care, compassion, and respect for family traditions and culture have no language boundaries.” Their website, which, translates into other languages, reaches out.

Sharing successful diversity outreach best practices can be a great strategy for hospices in promoting diversity in larger numbers.  Surely, there are hospice organizations that have created positive diversity outreach practices that can benefit others.  By sharing what your organization is doing, you send messages to other hospice organizations, potential staff members, patients, and community members that you support the hospice philosophy of quality end-of-life care for everyone.


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.

Monday, May 7, 2012

Mother's Day Tribute to Mother Who Died From Alzheimer’s Disease (Video 5:07)

This post is dedicated to mothers everywhere, especially those who are living with or who have died from a terminal illness. The accompanying video is by raindancer808 from New Orleans, Louisiana. She honored her mother before she died with this Mother’s Day tribute that her mother never saw. She wrote:
“My Mom is in end stage Alzheimer's, and I wanted to do something special for her on Mother's Day.”

You can also read my tribute to a nun who positively impacted my life as a child and later developed and died from Alzheimer’s disease here:

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.