Here are the nuts and bolts of starting a hospice program for dementia patients

Education is comprehensive for staff

Hospice of the Valley in Phoenix, AZ, has a comprehensive dementia care program that has resulted in an increase in dementia patient referrals.

"As we provide education, we know that dementia is going to touch everyone's life in some way or another," says Maribeth Gallagher, RN, MS, NP, dementia program psychiatric nurse practitioner and music consultant for Hospice of the Valley.

The hospice has created a sing-along CD for dementia patients, and there's a Stimulation Of Senses (SOS) program in which sensory bags are given to clinical staff to use with dementia patients, says Jan Dougherty, RN, MS, dementia program director.

"We've given the sensory bags to our team members who have the highest concentration of dementia patients," Dougherty says. "And we say on every visit, 'You need to make a sensory connection.'"

About 200 hospice employees have the SOS bags, which contain aroma bags and spray, tactile balls, and a book that is illustrated for older adults.

Music is an important part of the sensory bags because music holds a lot of potential for stimulating people with moderate to advanced dementia, Gallagher says.

"Music that is heard over a lifetime is associated with positive feelings," she notes.

Hospice of the Valley's dementia program also includes extensive education for staff, as well as training for teaching caregivers about dementia and behavior. Gallagher and Dougherty describe the key elements of the program, as follows:

1. Distribute SOS (sensory) bags to patients and caregivers.

Hospice employees have reported many positive stories about responses from patients who have received the SOS bags, Dougherty notes.

For example, the book contains words, such as "I love to eat warm apple pie and vanilla ice cream," and dementia patients will giggle in delight when this is read to them, Dougherty says.

"The sensory bags have bubbles to blow around the person, and we have balloons that we can blow up for them," she adds. "We end our visits with a Hershey's Kiss candy because chocolate is so wonderfully good and positive."

For the sense of smell, there are lemon and lavender aromatherapy spray and vanilla-scented lotion, which could be used during a massage.1

The idea is for hospice staff to use one or more items from the sensory bag at each visit, spending five to 10 minutes on stimulating the patient's senses. And hospice employees are expected to make a connection with the patient, using these items, Dougherty says.

The SOS bags also contain a sing-along CD and a CD player, and the music can be played during the patient's bath or other daily activities, Dougherty notes.

"A person who was once combative is now relaxed, singing along, and relaxing," Dougherty says. "So we receive the most amazing anecdotal reports of how people reveal themselves, even if just for a moment, and the families will say it's wonderful and they didn't know the loved one was present in that way."

2. Make familiar music an important part of patient care.

Hospices often use music and music therapy in patient care, but for dementia patients, Hospice of the Valley has gone the extra mile.

Gallagher, who is a professional musician, as well as a nurse practitioner, has personally seen how music can form a powerful connection with people, whether it's in a nightclub venue such as when she used to sing on stage or in a church.

When the hospice formed the dementia care program, she did a little research about dementia to see how music was being used in patient care.

Since everyone has heard music since childhood and many people have had their strongest connections to songs during their teenage years, Gallagher decided to produce a CD of songs from most hospice patients' youth.

"I read somewhere that the parts of the brain that process music are some of the last to deteriorate in illnesses affecting the brain," Gallagher says. "So at the Hospice of the Valley we want to celebrate any residual abilities a person has, exalted, and celebrate."

3. Educate staff and caregivers about hallmark behaviors and disease progression with dementia.

"We talk about what confusion is and how it can be a delirium, which is an acute altered mental status, or it could be dementia," Gallagher says. "Delirium can be caused by a medical problem, or if someone with dementia has a urinary tract infection, we can see a behavior change, and the problem can escalate."

Staff and caregiver education also focuses on behaviors of dementia patients.

"We look at the person in the context of his or her environment and figure out what are the contributing factors that could be causing this behavior," Gallagher says. "We look at behavior as a form of communication that is used by someone whose language ability is impaired."

Hospice staff is taught to ask themselves, when they see a change in behavior, 'What is the unmet basic need that this person could be trying to communicate?' Gallagher says.

Both caregivers and staff are given as part of their dementia education a book, titled, Joining the Journey, which provides an overview of dementia, categories of memory, and observable changes in behavior, according to the stage of dementia, Gallagher says.

"We like to make sure people know where a person is in the disease state and what they may need to do to optimize the person's experience," Gallagher says.

It's difficult for caregivers, who perhaps have known and loved this person for decades, to acknowledge all of the changes that have taken place, Gallagher notes.

"It helps to show them pictures of the brain and its deterioration and to explain that no matter how many times they ask their spouse to do something, the person just can't do it anymore," Gallagher says. "Then with that knowledge, hopefully, the caregiver can move on to exploring new ways of maintaining a meaningful connection."

Reference

1. Dougherty J, Long C. Seven Steps to Improving the Hospice Benefit in Dementia. Caring. 2006;25:20-22, 24-26.

Need More Information?

  • Jan Dougherty, RN, MS, Dementia Program Director, Hospice of the Valley, 1510 East Flower Street, Phoenix, AZ 85014. Telephone: (602) 636-6309.
  • Maribeth Gallagher, RN, MS, NP, Dementia Program Psychiatric Nurse Practitioner/Music Consultant, Hospice of the Valley Dementia Program, 1510 East Flower Street, Phoenix, AZ 85014. Telephone: (602) 636-2220. Email: mgallagher@hov.org.