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.

Hospice and Nursing Homes Blog

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.

Hospice and Nursing Homes Blog

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

     recruitment

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.

Hospice and Nursing Homes Blog

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.”

Honoring a Nun Who Has Alzheimer's Dementia

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:

https://www.linkedin.com/pulse/honoring-nun-who-has-alzheimers-frances-shani-parker?trk=mp-reader-card

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.

Hospice and Nursing Homes Blog

Asexual Older Adults (Research, Asexuality Video 8:01)

Clara Meadmore, an asexual older adult, was Britain’s oldest virgin at 105 years old. According to an article by Luke Salkeld in Mail Online, Clara credited not having sex as the secret of her longevity. Proud of her innate celibacy, she said she just wasn’t interested in all the “hassle” of having sex. Ironically, while many people wrongly stereotype older adults as being asexual simply because they are old, people like Clara intrinsically have never had any interest in sex or sexual attraction to others.

I became interested in learning more about asexuality in older adults after attending an informative Area Agency on Aging workshop about healthcare and other life issues of lesbian, gay, bisexual, and transgender (LGBT) older adults. As we discussed misunderstanding and intolerance regarding sexual orientation, one participant reminded us that asexuality is frequently excluded in these conversations. Later while researching this topic on my own, I discovered that asexuality, particularly regarding older adults, has only become scientifically researched as a sexual orientation in recent years.

Like many in the LGBT population, asexuals  have unique issues adjusting to a predominantly heterosexual and sex-oriented society. Some have the need to “come out of the closet” and explain their identity in order for others to understand them better. Others may feel ashamed, isolated, or confused because they are different from the standard society conveys as normal sexuality. They are a diverse community with people experiencing relationships in various ways. For example, some may have close relationships with sexual or asexual partners, although the asexual partners have no sexual attraction. Emotional and romantic attractions are not the same as sexual attraction.

I noticed that the media focus on asexuals emphasizes younger adults. In one asexual group forum I visited on the Internet, an older adult woman asked several times for help in finding other older asexual adults with whom she could communicate. Asexual older adults have more difficulty finding resources and supportive groups where they can share their concerns in an accepting environment. Fortunately, the Asexual Visibility and Education Network (AVEN) hosts the world's largest online asexual community and a large archive of resources on asexuality that can benefit anyone interested in this topic. The Asexual News is another helpful resource. You can read a more recent blog post of mine on asexuality here.

The following video titled Asexuality: The Making Of A Movement Trailer focuses on the emergence of the asexual community and the lives of several asexual people. The completed full-length film documentary directed by Angela Tucker premiered at the Frameline Film Festival in San Francisco's Roxie Theatre on June 18, 2011.

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

Rural vs. Urban End-of-Life Care (Nursing Home Research, Video 1:37)

Dying is universal, but what about differences and similarities in end-of-life (EOL) care? Most of my nursing home experiences with hospice care have been in an urban area. I was curious about this University of Rochester, NY research that compared rural and urban end-of-life care in nursing homes.

The purpose of this study by the University of Rochester, NY was to examine urban-rural differences in end-of-life quality of care provided to nursing home residents. A national sample of nursing homes was used. Three measured areas of focus were in-hospital death, hospice referral before death, and presence of severe pain.

Research results indicated there were urban-rural differences for in-hospital death and hospice quality measures, but not for pain. Compared with nursing homes located in urban areas, facilities in smaller towns and in isolated rural areas had significantly worse EOL quality for in-hospital death and hospice use. Differences were not statistically significant between facilities located in small towns and isolated rural areas. 

According to the report, this study provides “empirical evidence for urban-rural differences in EOL quality of care using a national sample of nursing homes.” This research data is important because it serves as a necessary first step toward improving EOL care for dying nursing home residents and for bridging the urban-rural gap.

This video titled End of Life: Burdensome Transitions from Brown University refers to another EOL study that addresses health care transitions such as moves from the nursing home to the hospital. These burdensome transitions can result in medical errors and lack of care coordination. For persons with advanced dementia, they can cause emotional distress and agitation. According to this study, such transitions are not consistent with goals of providing dying patients with comfort, and a fifth of them experience at least one during their last three months. African Americans and Hispanics were more likely than whites to experience these burdensome transitions.

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.

Hospice and Nursing Homes Blog

Parkinson’s Disease: Children’s Views (Video 5:19)

Parkinson’s disease, a degenerative nervous system disorder, is common among older adults. Symptoms can include impaired shaking (tremors), walking, movement, and coordination. As with any disease, children are impacted by family members who have it. Having been an educator of students from ages three through eighteen for many years, I know that a quick way for them to believe incorrect information about important topics is to have adults not give them accurate age-appropriate answers to questions they may or may not ask. John Provo, a grandfather with Parkinson’s disease, is a man who addresses this concern.

He meets children’s informational needs about Parkinson’s disease by finding out what they want to know, helping them understand and cope with the disease, and by giving them concrete ways to help someone who has it. He invited children from all over the world to write to him about their experiences with parents and grandparents with the disease. He has created several videos specifically with children in mind. These are questions children often have about Parkinson’s disease:

What is Parkinson’s disease?

What causes it?

Is there a cure?

Is Parkinson’s disease hereditary or contagious?

What changes will occur with someone who has the disease?

Can someone die from Parkinson’s disease?

In this video Through the Eyes of a Child -Part 5.wmv, John Provo’s granddaughters speak about their Parkinson’s disease experience with him.

"Life is not always easy for you, or the people you love.  Be brave, be kind, be understanding".

                                          - John E. Provo

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.

Hospice and Nursing Homes Blog

Chaplains Provide Spiritual Health (Hospice-Palliative Research, Music Video 2:12)

We often hear about end-of life care with emphasis on the roles of doctors and nurses. Spirituality of patients may be overshadowed sometimes by the more visible efforts of providing quality of life at physical levels. But hospice-palliative care chaplains also make positive differences in the healthcare status of many patients by providing a comforting presence during a critical phase in life.

Duke University research documenting the relationships between the receipt of less spiritual care than desired and patient outcomes was done with 150 patients with advanced cancer.  The vast majority of them (91%) indicated they had spiritual needs. Most desired and received spiritual care from their healthcare providers, religious community, and hospital chaplain. Unfortunately, a significant subset of patients didn’t receive the level of spiritual care they wanted. When this happened, patients were at risk of depression and reduced sense of spiritual meaning and peace. These unmet spiritual needs negatively impacted patients’ healthcare status.

A’Shellarian Anthony, chaplain at Delaware Hospice, provides weekly counsel and prayer with her patients. Part of a unique program there that includes specialists who sing, she also provides the healing powers of music:

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.

Hospice and Nursing Homes Blog