Maureen Groden wants to dispel one of the stigmas of hospice care - the belief that it's only for people in their last weeks of life.
"That's a myth," said Groden, hospice and palliative care manager for the VNA Hospice of Cooley Dickinson Inc. Take, for example, the benefits of hospice care for patients with Alzheimer's disease.
That devastating condition robs people of their memory and ability to function while they are still alive. More than 5 million people have the disease, and the incidence of other types of dementia is on the rise. However, while many patients with a terminal diagnosis for dementia qualify for hospice care, few families seek this help.
"People lack information about what makes someone eligible," Groden said. "There are also misconceptions about we do, which includes helping families make difficult decisions. There are many services available that people don't know about, and families dealing with dementia need a tremendous amount of support and information.
"It's important for them to get an early referral before the situation becomes acute," she continued. "But people don't know when to have this conversation, even though we do informational visits."
Eileen Drumm, hospice service representative for Beacon Hospice Inc, echoed that assertion.
"When people hear the word 'hospice,' they think the person is giving up," she said. "The biggest myth is that hospice only provides care when a person has hours or days left to live. The reason the myth exists is because so many people wait until close to the end to utilize the benefit. The word 'terminal' makes people freak out, but the person may have six, 12, or 18 months left to live."
Reports from the National Hospice and Palliative Care Organization show the median length of hospice service was 21 days in 2009. However, people who receive it earlier live an average of a month longer than similar patients, and the care helps significantly with symptoms.
Hospice also offers help 24 hours a day, which is important. "People can call us at 3 a.m. if their loved one is in pain or having a hard time breathing, and our nurse will go out and visit them. We also
give families a comfort kit which contains medication to control nausea or agitation," said Joanne Schlunk, director of Mercy Hospice.
Hospice care is provided by a team that typically includes a physician/medical director, nurses, nurse's aides, personal-care attendants, social workers, chaplains, and volunteers. In addition, the government mandates that hospice programs offer up to 13 months of bereavement support. The care is holistic and focuses on the person's life and interests before the dementia set in, as well as their current condition.
Since dementia is a disease that progresses slowly, families become accustomed to making difficult decisions and don't usually seek help until the situation escalates to crisis proportions. This, however, doesn't have to be the case.
Difficult Decisions
Schlunk said patients with dementia range from those for whom it is a primary diagnosis to people whose memory loss is caused by a stroke, Parkinson's disease, or other health issues.
Groden agreed, adding that it's unusual for a person in their 70s or 80s to have only one disease, because health problems such as diabetes, hypertension, heart disease, and emphysema are common. But in order for an individual to qualify for hospice with a diagnosis of dementia, he or she must require significant help with daily activities, be disoriented, exhibit significant memory loss, and have approximately six months to live, assuming that the disease follows its natural course.
"People have to be pretty compromised," she said, adding that the ability to perform daily activities does not pertain to other terminal diagnoses. "But there is a lot we can do to help. The services we provide are individualized. Everyone is unique, and although people may have the same diagnosis, there is no formula. But we can educate family members about what is normal."
In addition, hospice providers can help families decide if they want their loved one to continue to have bloodwork or other tests for conditions that can't be cured. That's important because the tests can be uncomfortable, and frequent hospital visits affect the quality of life the person has left.
"You have to consider the toll it will take on the person," Groden said. "If the person has advanced dementia and is in an ambulance, they will have no idea of where they are going. It's not about denying people care; it's looking at what is important to their quality of life."
Many families don't know they have the right to make such choices and aren't familiar with other measures that could bring their loved one comfort. "Aggressive care doesn't always translate into length and quality of life," she explained. "Dignity is very, very important, and is a huge part of providing humane care. You have to really believe that each individual is a unique and important person regardless of the behavior he or she is exhibiting."
The approach used to treat advanced dementia today is to allow people to exist in the time frame they believe they are living in, without trying to bring them back to reality. "Our goal is to make sure they are safe and their dignity is upheld. We also focus on who the individual is," Groden said, adding that knowing a person's interests can be helpful. "We have a volunteer who is bringing her singing group to sing with a patient in a nursing home who used to love to sing herself," she said. "And another patient loved animals, so a volunteer brings her dog to visit."
Advanced dementia can cause agitation and behaviorial changes. But it's a mistake to simply attribute yelling to the disease, because the behavior may be caused by pain. A pain assessment is critical for patients, Groden said, explaining that conditions such as advanced arthritis or spinal stenosis can be helped with a good mattress and medication, while squirming in a chair may be related to bed sores or a skin condition. "Don't assume the person is yelling just because they have dementia. You can almost always make things better."
Necessary Measures
Decisions in the end stage of life can include whether to have a feeding tube inserted into the stomach, which carries risks and benefits and can prolong or shorten life. This measure becomes necessary because dementia can cause the muscles of the throat to stop working properly. And although food keeps people alive, eating and/or a feeding tube can result in aspiration pneumonia, which occurs if food ends up in the lungs instead of the stomach "It's a hard decision," Schlunk said.
Groden agrees and says food is equated with nurturing, so when someone can't eat, it weighs heavily on people's hearts, which is another reason why it is important to help the patient stay independent as long as possible.
"Decisions have to be made again and again, and it's really hard for families because there are so many periods during the course "the disease when they have to do research, especially if the person is confined to bed, is weak, and has lost a lot of function," Schlunk said. "Caregiving can lead to exhaustion, so we help families at different stages of the decline."
In many cases, family meetings are needed. "You need facts to make good decisions, and also need to know what the expectations are for your loved one," Schlunk said. "And everyone needs a chance to be heard. Although everyone in the family may love the person, a caregiver who lives with the patient may have a more difficult time letting go."
Resentment and other related emotions can arise when siblings who live far away express strong opinions to caregivers, who often feel abandoned and are left to deal with the agitation and loss of recognition that often occurs as dementia advances. "But people (with demential still have moments of lucidity and may say something that has such profound meaning that theft loved one knows the connection is still there," she added.
Hospice volunteers can provide a supportive presence. They often read to the person, play music, or simply sit and talk or hold the patient's hand. "We all have an inner need for connection, and having the sense that someone is nearby helps people feel less lonely. They are still having inner experiences, and when you don't understand what is happening in your environment, it can be very scary," Schlunk said.
Drumm agrees. "Family members have expectations, and when they are not met, they become discouraged. But the purpose of a visit should be to have their loved one feel connected instead of being isolated in a room. The person takes in their environment even though they may not recognize people, so one of our goals in hospice is to educate families and help them find new ways of connecting."
They also try to keep the environment soothing. "It's important to prevent the patient from becoming overstimulated. Even the sound of the shower can be frightening because, when a person loses their memory, they don't have the context to understand noises," Groden said.
Bereavement support can be valuable, and Schlunk said primary caregivers may suffer the loss of the person they loved as well as the loss of their role. "They may begin to second-guess decisions they made. Sometimes there is a lot of regret."
Inside the Mind
Beacon is affiliated with Amedisys, which is the largest home health care company in the country, and its goal is to provide a continuum of care with seamless change as the end of life approaches.
Director of Operations Lisa Adams said typical changes caused by advanced dementia include the loss of speech and the ability to walk, weight loss despite average nutrition, and pneumonia and infections, which set in as the body loses its ability to function normally.
"A person may take an hour and a half to eat one meal," she said, adding that a hospice provider will have the patience to sit with the person and give them that time, rather than assuming they aren't hungry.
Beacon created a program called Deep Harbors for Dementia, which contains a number of measures designed to provide comfort. "We work to create a connection between the patient, their loved ones, and staff members who work with them to preserve the patient's dignity," Drumm said. "Family members often pull away from visiting the person, as they don't like to watch them get worse, which upsets patients even if they can't express it."
She added that touch is very important, and although family members may wonder why they should visit if their loved one doesn't know who they are, "on some level, they do know you. If you take their hand, they will know you care about them," she said, explaining that small things such as massaging a patient's hand can bring them comfort. "The problem is that families look to the person to be who they were. But the disease is not their fault, and they are still human and very much alive."
Beacon's work with the Berklee School of Music revealed that tunes people with dementia enjoyed in their teens and 20s can elicit a positive response as the disease progresses, so its program includes creating a compact disc of music for every patient. "One lady we cared for would sing along to every word from 'Love Me Tender' by Elvis," Drumm said. "It was incredible to see, and helped her family realize that her spirit was still there and there was still memory in her body."
They also create a Chart of Life after interviewing family members. "One day a woman looked at it, pointed to her bridal picture, then touched her wedding ring," Adams said, adding that it meant the world to her family.
Their 'tool kit' also includes a teddy bear, and although it's important to avoid treating patients with dementia like children, having something soft to touch can be comforting.
"We honor people, validate them, and meet them where they are. Our goal is to help families enter their loved one's world, since the person can no longer enter theirs," Drumm said. "It's all about love."
They also give patients a cloth activity pad. One side is soft and fuzzy, while the reverse side contains large buttons, pockets, zippers, and a compartment to hold photos. "It's good for people who worked with their hands, as it keeps them busy," she said.
Early Intervention
Drumm said it's never too early to call and inquire about hospice care, as providers can refer families to other services they may need.
"Hospice care is for the whole family," she said. "The end stage of the disease can cause conflict, which amplifies the family dynamic as emotions run so high.
"Our philosophy," she added, "is that we want people to have a peaceful death. We don't want anyone taking worry and anxiety from this life to the next, so any-thing we can do to help ease the heart, mind, and spirit of the dying person is important."
