Facing Life’s Last Peak at Hospice of the Valley: Innovations in Dementia Care
By Beverly Medlyn
Kathy Ritchie watched her mother’s behavior grow increasingly bizarre – from spitting in public to elbowing her way to the front of the communion line at church to ask the priest over for dinner. It took several years and many doctors to find out what was wrong: frontal-temporal dementia.
Jim Jeffries began noticing his wife’s forgetfulness when they were both in their early 50s and still teaching. She couldn’t focus, was easily distracted, and lost interest in her hobbies. Both took early retirement in their mid-50s. On a celebratory Hawaiian cruise, Jim’s wife, once an avid reader, spent a lot of time on deck with a book in her lap. But she wasn’t turning the pages. Diagnosis: early-onset dementia.
Hospice of the Valley social worker Christie Kramer talks with dementia patient Catherine Duval and her daughter, Madelon Lawrence. Dolls are pleasant distraction for patients at Gardiner Home, an inpatient hospice homededicated solely to dementia patients.
(Photo by Jaime Scowley)
Madelon Lawrence has heard others describe their loved ones’ long, slow descent into dementia. But for her 85-year-old mother, it wasn’t like that. “It was bam! Just like that,” she said. “It seemed to come on suddenly.”
Margarita Ritchie, Linda Jeffries and Catherine Duval are at the end-stage of their varied dementia journeys, all in the care of Hospice of the Valley, one of the nation’s largest not-for-profit hospices, based in Phoenix, Arizona.
Each is served by hospice teams in different living environments: Ritchie at the Beatitudes Campus, which operates a nationally known dementia unit in partnership with Hospice of the Valley; Jeffries at home; and Duval at her daughter’s home with occasional stays at Gardiner Home, a Hospice of the Valley palliative care unit exclusively for dementia patients – believed to be a national first.
The family caregivers report that for the first time in a long time they and their loved ones feel at peace.
“All we want at the end of the day is for our loved ones to be treated with respect and dignity,” said Kathy Ritchie.
Innovation in dementia care
End-of-life care for dementia patients has come a long way over the last decade. Not long ago people with dementia were physically or chemically restrained and confined to institutions or a back room. Sadly, in some cases, that still happens.
“We are not yet serving people with dementia well,” said long-time geriatrician Gillian Hamilton, MD, vice president education/innovation for Hospice of the Valley. “Medical science is focused on searching for cures rather than optimizing quality of life using the knowledge we already have.”
Hospice of the Valley launched its dementia program in 2002. Based on the fundamental hospice principles of comfort and dignity, caregivers employ a person-centered approach based on knowing and honoring the unique needs and preferences of each individual. Dementia program staff members have won international and national recognition for their work.
Maribeth Gallagher, director of Hospice of the Valley’s dementia program, sings to patient Margaret Nance.
(Photo provided by Hospice of the Valley)
“We learn and celebrate the person’s ‘story,’” said Maribeth Gallagher, director of the dementia program, a psychiatric nurse practitioner with a doctoral degree in nursing practice who also has personal experience caring for her mother-in-law with dementia.
Upon admission, family caregivers complete an “About Me” biographical form about their loved one’s personal and work history, likes and dislikes. “About Me” is posted in dementia patients’ rooms or kept in the patient’s chart for easy reference by staff and volunteers to customize caregiving approaches. Does the person prefer chocolate or vanilla ice cream? If they raised a family, maybe holding a baby doll would evoke feelings of warmth and nurturing. If they enjoyed building or fixing things, perhaps a modified tool kit would engage them.
“Even if it’s just for a few moments – providing meaningful connections can optimize well-being and positively influence the emotional tone throughout the day,” Gallagher said. “We may not be able to change the way the person with advanced dementia thinks, but surely we can do something to change the way they feel.”
Once a professional rock singer who toured internationally, Gallagher is well aware of the power of music. She recorded a CD of old favorites – sung at a slightly slower pace – for staff and volunteers to play for patients and sing along. Family and professional caregivers also are encouraged to sing themselves. “Music is the universal language of the soul and transcends some of the limitations imposed by dementia. Every now and then a dementia patient who hasn’t spoken in years will surprise us by suddenly joining in singing along,” said Gallagher.
S.O.S. brings comfort
Other types of sensory stimulation also forge connections. “Sensory awareness does not require higher cognitive processing,” Gallagher said. “The sensory and visual parts of the brain are some of the least damaged in dementia. By stimulating the senses, there is an opportunity to tap into remaining abilities to create an increased awareness of self and the surroundings.”
Hospice of the Valley created the S.O.S. ™ (Stimulation Of Senses) bag for caregivers to use with dementia patients. The bag contains the sing-along CD, essential oils for aromatherapy, lotion for hand and foot massages, sweet treats, a large picture book, photographs, an inflatable beach ball, bubbles to blow and a squishy ball to squeeze.
Certified nursing assistants are key players in providing dementia comfort care. Though dementia patients typically resist bathing and grooming, using a soft approach can turn bath-time from battleground to playtime.
Eugene Townsend, nurse’s aide, recently met a new dementia patient who hadn’t had a bath in a very long time. “I introduced myself to the patient and extended my hand for a handshake,” Townsend said. “He shook my hand and smiled. ‘Your hands are dry and rough,’ I said. ‘I would like to put some lotion on them.’ I had some oil scented with lavender. He was very pleased to get a hand massage.”
Next Townsend handed the patient a warm damp washcloth and got one for himself. He suggested that it was time for them to wash their faces. The patient looked confused.
“I began to sing: ‘This is the way we wash our face.’ He started to sing along and do the same. Next were the hands and so on. By now I had gained his trust, and he allowed me to help him with the parts he couldn’t do. We finished the bed bath without incident. I completed his care with a foot massage. When I left the room the patient was asleep.”
Townsend learned these techniques in a dementia care class for certified nursing assistants at Hospice of the Valley. “I wish I had known these techniques years ago because they really work,” he said.
Medications at the end-stage
Non-pharmacological approaches are increasingly important at a time when elderly people often are taking numerous medications – some of which may do more harm than good for dementia patients.
“One of the first things I do with a new patient is review the medications carefully,” Hamilton said. “There are usually too many medications for a fragile brain to tolerate, and no matter how beneficial they may be in theory, many have interactions and side effects that increase agitation, drowsiness, confusion, and discomfort in persons who are elderly and also have dementia. For example, an agitated person with dementia who has trouble sleeping may be given Benadryl or Lorazepam/Ativan for sleep, when both of these medications often increase agitation and worsen confusion.”
Untreated pain is a common cause of negative behaviors. Because advanced dementia patients can’t communicate with words, they may express themselves by screaming or lashing out at others. Using nonverbal communication, Hamilton tries to determine where the patient hurts.
If it is unknown whether pain is a contributor, then a two-week trial of routine Tylenol can yield startling results: the person with dementia may be calmer, less agitated, and begin smiling. If the Tylenol results in no visible change, then it can be discontinued.
Challenges for the future
Already the sixth-leading cause of death in America, the incidence of dementia will continue rising as baby boomers age. Couple the growth with federal health care reform’s goal to improve health care at less cost, and the need is clear for new ideas and approaches to dementia care.
The disease’s long and often unpredictable trajectory sometimes impedes physicians’ referrals to hospice. Regulatory requirements for continued, documented decline of dementia patients on hospice sometimes result in discharges of patients who have reached a plateau – always difficult for patients and families.
Jeffries lives in fear of that possibility because the hospice team coming to his home to care for his wife Linda is absolutely essential to keeping her at home – which he is determined to do. Two hospice nursing assistants bathe Linda three times a week, and the nurse and doctor make house calls. Linda Jeffries was diagnosed in 2008.
“Dementia is a confounding disease that moves at its own speed and pace,” said Jeffries. “She’s in the late stage now but how do you document decline when you’re already at zero? She can’t stand on her own. She can’t talk. She can’t feed herself.”
Jeffries said Hospice of the Valley is the reason that Linda’s “decline” is on a plateau. “Without the care that the staff brings to the job, I suspect Linda would be nearer death,” he said. “The hospice staff strengthens the family resolve, and shares essential caregiver skills enabling us to maintain Linda’s dignity. Linda’s journey is bleak, but for us walking the journey with her, HOV lightens the path with dedication, knowledge, and human kindness.”
Similarly, Lawrence would like to keep her mother Catherine Duval at home. Diagnosed several years ago, Duval moved in with her daughter, who revamped her home to accommodate her mother’s condition. Every room has a motion-detector light, including the closets. In September, Duval became a Hospice of the Valley patient. Her behavior had become hostile and aggressive and she suffered sleep disturbances.
To assess and manage those symptoms, Duval spent 10 days in October at Gardiner Home, a dementia-only palliative care unit. “I was apprehensive at first,” Lawrence said. “Then I came here, looked around, and said, ‘This is nice. This is quiet. There’s only 10 patients. And they have volunteers and staff with patients 24/7. My mother is so much happier when people are with her.”
At the end of her mother’s stay at the historic ranch-style home, Lawrence appeared relaxed – and so did Duval. “It has been the best thing that has ever happened!” Lawrence said. “Not just for her – but for our whole family.”
Duval returned to the care of the hospice home care team. Lawrence plans to explore alternatives including bringing her mother back to Gardiner for short stays – either through the respite benefit or private pay. Any hospice dementia patient can stay at Gardiner on routine status for $200 a day – comparable to what they would pay at an assisted living facility.
For the Ritchie family, the turning point to hospice came after Margarita got pneumonia after falling out of bed at an assisted living facility. “That’s when I decided that it was time to call hospice because I didn’t know if she was going to live,” Kathy Ritchie said.
Margarita resided at several assisted living facilities before her daughter’s persistent efforts landed a bed on the dementia unit of Beatitudes Campus, operated in partnership with Hospice of the Valley. She noticed an immediate difference.
“What I’ve seen here with this model, with the relationship between the Beatitudes and Hospice of the Valley, is that everyone is working together and everyone is on the same page and everyone knows who my mother is and what she likes. And they know who her daughter is,” said Kathy Ritchie, 36, who is pregnant with her first child. “And that makes everything a lot better.”
Some elements of hospice care that Ritchie particularly appreciates for her mother are spiritual visits from a chaplain and regular massage therapy. “She was a devout Catholic, and having someone come in to pray with her – even though she may not understand it – it doesn’t matter. It’s having that comfort of another person there, just holding your hand and being with you,” she said.
Massage therapy also brings her mother relief. “Because she couldn’t move she was becoming very tight, you could see her body contorting,” Ritchie said. “The massage therapist has been working with her weekly to loosen her body and give her some comfort. It’s not just comfort in the form of medication – but it’s the value of human touch.”
A writer by profession and hobby, Ritchie blogs about her experiences with her mother: http://mydementedmom.com/. (Be sure to check out: My Mom Eats Raw Chicken. Stop Complaining About Your Life.)
Palliative care for dementia
Just about every family member who cares for a dementia patient wishes there was more help available sooner.
Hospice of the Valley established the Palliative Care for Dementia program for persons with dementia who are not receiving hospice services. The program is funded through private payment from the patient/family at a monthly rate of $250.
Education and support from social workers by phone and in-person.
Telephone consultations for caregivers about behavioral symptoms and living wills with Dr. Hamilton.
An online caregiver education program developed in partnership with Beatitudes Campus.
Caregiver respite for four hours a week, if requested and when available, given by volunteers with special training.
A 24-hour phone line to a nurse or social worker when issues arise off hours.
Professional caregiver training for those who provide dementia patient care in home and group home settings.
Hospice of the Valley has applied for grants to underwrite the program, which currently is funded entirely by users and donations.
“There is so much that families and professional caregivers can learn about how to help people with dementia to have a better quality of life for as long as they live,” Hamilton said. “The goal of the program is to bring comfort to people with Alzheimer’s disease and other dementias, and also to bring comfort and support to their families.”
About the Author: Beverly Medlyn is communications director of Hospice of the Valley, based in Phoenix, Arizona. She can be reached at firstname.lastname@example.org.