Dementia, Alzheimer’s Sexual Consent in Nursing Homes (Research, Video 1:04)

Sexual activity in nursing homes is the elephant in the room that many staff and family members don’t want to recognize. With the increasing numbers of baby boomers, including those with dementia, Alzheimer’s, the elephant is growing fast, sitting widely in their laps, and poking its trunk in their reluctant faces.

In 1995, the Hebrew Home in Rivedale, New York, wrote the nation’s first sexual rights policy for older adults in healthcare settings. This policy has been updated recently, particularly regarding dementia, sexuality, and sexual activity consent. Nursing home guidelines are crucial in assisting healthcare staff in making appropriate judgments on these matters.

Without guidelines, many staff members reflect their own biases, particularly regarding older residents with dementia. Examples are discomfort, denial, and other resistance by some staff members when they are confronted with the sexual behavior of these residents in long-term care facilities. Nursing staff research involving an extensive search of electronic databases and reported in the International Journal of Nursing Studies revealed the following:

1)     Nursing staff shows rather positive attitudes toward later-life sexuality.

2)     The extent of the staff’s knowledge regarding sexuality in the aged seemed to be very limited.

3)     Staff caregivers hold rather conservative attitudes toward sexuality of institutionalized elderly.

4)     Responses to residents' sexual behavior were influenced by the nursing staff’s own level of comfort related to sexuality issues and the culture within the institution where they work.

In the following video, general concerns about sexual activity among nursing home residents are explained. 

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.

Hospice and Nursing Homes Blog

Hospice Racial-Ethnic Outreach: More Diverse Stories, Best Practices Needed (Research, Hispanic Video 4:39)

The hospice philosophy promotes the entitlement of quality end-of-life care for everyone. Unfortunately, hospice services are underutilized nationally among racial-ethnic communities. National Hospice and Palliative Care Organization 2013 website statistics report the following for 2011 regarding race and Hispanic or Latino ethnicity:

White/Caucasian   82.8

Multiracial or Other Race   6.1%

Black/African American   8.5%

Asian, Hawaiian, Other Pacific Islander   2.4%

American Indian or Alaskan Native   0.2%

Non-Hispanic or Latino Origin   93.8%

Hispanic or Latino Origin   6.2

While several barriers to utilizations have been studied, such as ongoing healthcare disparities, religion, and cultural practices, solutions always include the necessity of more outreach to racial-ethnic groups by hospice organizations. The use of role model stories is one of many ways that can promote diversity.

The Leonard Davis School of Gerontology at the University of Southern California researched the racial-ethnic outreach possibilities of comprising a brochure of hospice patient role model stories aimed at improving attitudes and knowledge of hospice among older African Americans. They used community-based organizations that included senior centers, community exercise programs, churches, and senior care management services in the greater Los Angeles area. Participants were African Americans aged 65 and older.

Hospice brochures with role model stories showcased African Americans who had experienced successful hospice programs. They shared their initial attitudes, beliefs, influences affecting their enrollment in the hospice programs, and outcomes resulting from their participation. The conclusion of this study revealed that "exposure to a hospice brochure containing theoretically driven, culturally parallel, role model stories was effective in improving knowledge of and attitudes toward hospice as well as intentions to enroll a family member or self in hospice care.”

Sharing other successful diversity outreach best practices can also be a great strategy for hospices in promoting diversity in larger numbers. When I have brought up this racial-ethnic outreach topic in the past, few hospice organizations have responded. Surely, there are hospice organizations that have created positive diversity outreach practices that can benefit others. By sharing the outreach their organization is doing, hospices send messages to other hospice organizations, current and potential staff members, patients, and community members that they support in practice the hospice philosophy of quality end-of-life care for everyone.

In this role model story video featuring Hispanic brothers, their struggle to find appropriate end-of-life care for their mother is explained. Hospice of the Valley serving central Arizona turned out to be “the best decision” they ever made.

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.

Hospice and Nursing Homes Blog

Death Rattle Sounds: Myth vs. Fact (Research, Video-Audio .44)

Death rattle sounds refer to the rattle-like breathing noises caused by respiratory tract secretions during the final days of life. Those who are dying may lose their ability to swallow, resulting in an accumulation of these secretions. The following researched death rattle information addresses several myths that exist regarding this experience.

Death Rattle Myths and Facts

     1) Myth: Death rattle symptoms are rare.

         Fact: Death rattle symptoms are common in dying patients.

     2) Myth: Death rattle symptoms are difficult to watch or control.

Fact: Death rattle symptoms can be distressing for some observers. Symptoms can be treated through a combination of measures. It should be noted, however, that there is no conclusive evidence to suggest that any drug is superior to a placebo containing no medication. Treatment may serve to alleviate the perceived distress of observers rather than benefiting the patient.

    3)  Myth: Patients showing death rattle symptoms undergo a great deal of pain.

       

Fact: The level of consciousness in patients who may appear to be actively choking while experiencing death rattle symptoms is usually so low that it is generally assumed that they are not in pain. Healthcare providers should consider why they treat death rattle symptoms. Some of the drugs involved have negative side effects. Caregivers and loved ones should be educated regarding the death rattle experience and reassured that it is unlikely that patients are distressed.

Rattle-like breathing sounds resulting from an accumulation of secretions in the dying patient’s airway can be heard during the death rattle. It would be both helpful and interesting to read firsthand comments from healthcare staff and other caregivers regarding their personal involvement with patients and observers during death rattle experiences. 

This YouTube video features death rattle sounds from the mouth of a dying patient.  

 1) Read about death rattle impact on hospice workers and over 50 comments from readers here. 

2) Read more information about dying and the death rattle here.

3) Read the many comments below from other readers.

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

Great-Grandparents Raising Children: A Tribute (Video 2:42)

Imagine being parents again after 65 years of marriage. While it is common now to read about the millions of grandparents raising children, very little is mentioned about great-grandparents in similar circumstances during their golden years. Great-grandparents accepting a responsibility of this magnitude are presented with many challenges legally, financially, physically, and mentally. They need support from the larger community in the form of education regarding available resources, respite care, and assistance with general problem solving. The AARP Grandparents Information Center is one resource.

The Cooks are great-grandparents who accepted the commitment and sacrifices of raising their great-grandson who is now an adult. They have reached that amazing stage where they can look back on their wonderful accomplishment with great pride, knowing they saved his life “like a seatbelt.”

View here Grandparents as Parents (GAP): Help for Grandparents Raising Grandchildren.

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.

Hospice and Nursing Homes Blog