Clowns in Dementia, Alzheimer’s Care (Research, Video 4:59)

For years, I never thought anyone couldn’t love a clown. I finally met such a person in my neighborhood. She has coulrophobia, an irrational fear of clowns. Doctors and scientists say that the fear comes from not knowing the identity of the person behind the excessive makeup. The clown’s makeup and ability to break social behavior norms create a state of panic causing the observer to have difficulty in breathing, irregular heartbeat, sweating, nausea, and feelings of fear. My friend has explained her fear to me, and it is very real. She refuses to go to McDonald’s restaurant for that reason. I mention this to emphasize that successful engagement between patients and clowns does not apply to everyone.

However, for many long-term care residents with dementia, elder clowning brings numerous rewards. This research on elder clowns focused on residents with moderate to severe Alzheimer’s disease in nursing homes. A pair of elder clowns visited all residents twice weekly for 12 weeks. They used improvisation, humor, empathy, and expressive modalities such as songs, musical instruments, and dance to individualize resident engagement. After measuring outcomes, researchers determined that elder clowning reduced moderate to severe behavioral and psychological symptoms of dementia (BPSD) of nursing home residents primarily with Alzheimer's. Elder clowning is a promising intervention that may improve Alzheimer's care for nursing home residents.

This video highlights the dynamic elder clown program of the Humour Foundation. Elder clowns are highly skilled professional performers trained by the Humour Foundation to work in aged care and dementia facilities. Using the healing power of humour, elder clowns aim to improve quality of life by working in partnership with facility staff and residents: 

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

Wheelchair Ride Rewards (Research)

As a hospice volunteer in Detroit nursing homes, I always knew wheelchair rides were a lot more than just moving residents around in mobile chairs. They provided great bonding moments that presented priceless occasions for us to learn interesting facts about our personalities and pasts. Most of all, wheelchair rides gave patients opportunities to extend boundaries beyond their rooms to include other patients, staff, visitors, activities, stimulating sights, sounds and even smells. Nursing home research supports this type of socialization.

The purpose of this research was to examine ways in which nursing home residents experience and enhance their sense of dignity. The two most important mechanisms for enhancement were feelings of being in control of one’s life and being regarded by others as a worthwhile person. Both feelings could be supported through the following:

 1) Finding ways to cope with one's situation

 2) Getting acquainted with and at ease with new living structures at the nursing home 

3) Experiencing physical improvement with or without an electric wheelchair

4) Being socially involved with nursing home staff, other residents and relatives

5) Being among disabled others while experiencing less disrespect from the outer world

This post would not be complete without mention of Nat, one of my favorite wheelchair riders. Nat had a wheelchair-riding contest with himself every time we returned to his room from outdoors. He briefly pushed his wheelchair fast to beat the door buzzer that went off when we entered from the porch. This was a race he always won. He never tired of playing this game or bragging about how fast he was every time he won. People sitting in the lobby began to expect that when we entered, there would be a lot of hoopla over Nat’s beating the buzzer. Laughing with triumph, he enjoyed celebrating his victory and proudly telling everybody I was his wife. This came from a white man who initially expressed reluctance about being assigned to me, a black volunteer. Nat had underestimated the power of wheelchair ride rewards.

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

Nursing Home Hospice Impact on Certified Nursing Assistant (CNA) Staff (Research, Video 1:56)

Hospice care in nursing homes continues to increase as more people become aware that hospice services are available wherever they live. Back in the 90’s when I first started hospice volunteering, many people told me they thought hospice care was only at private homes or in free-standing hospice facilities. On the negative side, there were those who thought nursing homes would get kickbacks from hospice referrals. Speculation about nursing homes receiving additional staff hours at no cost, which could lead to decreases in nursing home staffing, was mentioned.

What has happened in terms of nursing assistant staffing with the introduction of hospice care in nursing homes? Researchers at Warren Alpert Medical School at Brown University studied this process for several years with these staffing results:

“The introduction of hospice services in a nursing home did not result in statistically significant changes in nursing assistant (CNA) staffing. Instead, increases in hospice volume resulted in small increases in CNA staffing.”

As a hospice volunteer working directly with patients, I had many opportunities to observe and communicate with CNA staff members who were often first responders in meeting resident needs. Many exhibited dedication and genuine care for residents in spite of their own expressed hardships on the job such as low pay, high staff turnover resulting in increased workloads, and lack of appreciation. The following video titled I am a Nursing Assistant shares their caregiving challenges and rewards:

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