Caring for the Dying Dementia Patient, Honoring the Person Inside
Earlier this week I was listening to a Podcast from the National Hospice & Palliative Care Organization (NHPCO) on hospice data that relates to a proposed new wage rule. The rule itself was not of particular interest to us as doulas, but one aspect of the data was: the most common diagnoses for hospice patients. According to the person summarizing the data—and confirmed by government data that I looked up—Alzheimer’s Disease is the number one most frequently used diagnosis for hospice patients today. It wasn’t clear from the presentation whether or not this is a new phenomenon. But it was surprising to me.
When I left my position as the Manager of Social Services at a hospice in NJ, almost five years ago, Alzheimer’s was not the top diagnosis. It might have been chronic obstructive pulmonary disease (COPD) or heart disease, which are currently two and three on the list respectively. When I began working in hospice almost 25 years ago, different types of cancers filled the top categories of hospice diagnoses. Now, only lung cancer remains on the list of top 10 diagnoses—in the number five spot.
What added to my surprise was the fact that the presenter also said that “senile degeneration of the brain, not elsewhere classified”—in other words, other forms of dementia—was number four on the list. And, Alzheimer’s disease with late onset was listed at the number seven spot. These different categories of dementia are tied to reimbursement codes, which is why there are three designations for the same basic disease. Thus, dementia of one form or another now accounts for three of the top ten hospice diagnoses. That is an amazing statistic, which has implications for us as doulas.
Given the aging of the population, it is likely that this dominance of dementia diagnoses will probably grow substantially over the next ten years or so, meaning that you will work with more and more people suffering from dementia. Since hospices are a primary source of referrals, and you will also refer families you work with to hospice, you should understand the criteria they use to determine eligibility.
The primary diagnostic tool used by hospices for this purpose is the Functional Assessment STaging Scale (FAST), which utilizes graduated scores from 1, showing the least cognitive decline, to 7f, which is the severest measure of decline. A score of “1” indicates “normal aging;” a score of “2” indicates “possible mild cognitive impairment;” higher scores reflect increasing severity and cognitive decline. To be eligible for hospice a person should have a FAST score of 7a-7f, reflecting the most advanced stages of the disease. A score of 7a means that the person speaks only 5-6 words during the day; 7b, means they speak only 1 word clearly; 7c, they can no longer walk; 7d, they can no longer sit up; 7e, they can no longer smile; and 7f, they can no longer hold up their head.
In addition to being assessed at stage 7 on the FAST scale, a person must meet one of two other criteria. The first is a severe co-morbid illness, such as COPD, congestive heart failure (CHF), cancer, and so on. Or, the person must have a secondary condition of delirium, recurrent or intractable infections, multiple severe decubitus ulcers within the past 12 months, or an inability to maintain sufficient fluid or calorie intake as shown by a weight loss of 10% during the previous 6 months. You can see from the above criteria that the dementia must be quite severe for a person to be hospice eligible.
Knowing the end-stage criteria will give you a chance to explain to family when it might be time to call in hospice to evaluate their loved one’s appropriateness for services. As a doula, you would hope to work with a dying person before the illness has progressed to the end-stage, because then you are more likely to have them participate in a legacy project or express their wishes for the last days of life. But of course, we don’t always have this opportunity. If a family decides to use doula services at the end-stage of the illness, there are still ways to work with the dying person even though they can’t engage in the care.
If you are working with a person who has dementia before they reach the end-stage, one of the most important things to remember is to continue talking with them as you would to an adult without dementia. The person may be confused and have very poor short-term memory, but they are still “alive inside.” You want to honor their dignity, even though their autonomy is diminished. Don’t treat the person like a child.
You also don’t want to try convincing them about realities they can’t grasp. If on a visit the person thinks you are their sister instead of doula, just go with it. And help family to respond similarly if the person is confused about who they are or where they are. Trying to pressure the person to accept something their mind is telling them is otherwise may simply agitate them and make them afraid. On the other hand, you don’t want to promote misinforming a person who may at times be less confused and deserves honest responses. You have to find the right balance.
In working with dementia at any stage we know that music can be comforting and also has the capacity to touch parts of their being that words can’t reach. A program called Music & Memory developed for dementia patients utilizes music the person enjoyed when they were in their late teens and early twenties. Create a personal playlist of this music by talking to family and friends of the person.
When this approach is used, the person may connect better to their long-term memory and recover some of who they have been inside. I have seen people listening to their playlist start singing along when they hadn’t been speaking much or very clearly for some time. After a session of music, you might find it possible to get some simple responses to questions about their life or their wishes for what will make them more peaceful. If you haven’t already seen the documentary film titled, Alive Inside, which is about the Music & Memory program, it is really worth seeing. The film won the Audience Award at the 2014 Sundance Film Festival.
Another well respected approach to working with dementia comes out of a program called Namaste Care, which was developed in 2003 at the Vermont Veterans Home in Burlington, Vermont by Joyce Simard, a social worker. The word “Namaste” means “to honor the spirit within,” which is the essence of the program, and makes for a good description of doula work as well. The program can be found in care facilities in many countries. Studies conducted in a number of U.K. nursing homes showed that the program increased quality of life overall by decreasing agitation, increasing engagement, improving communication, and lessening pain. Although this study was done in a nursing home, it makes sense that we would see similar results when it’s used with a person in their own home.
The two main principles of the program are establishing a comfortable environment and providing loving touch. Namaste Care generally involves two hours of concentrated engagement and care in the morning and another two hours in the mid to late afternoon. For best results, this care schedule is maintained seven days a week, whether the care is delivered in a nursing facility or the person’s bedroom at home. The structured nature of this approach provides a constancy of care that is comforting to the dying person. This approach is particularly helpful in advanced or severe dementia, when the person can no longer participate in activities or engage meaningfully with family and friends.
The room where the person is should have soft lighting, relaxing music the person likes, and the scent of lavender, lemon, geranium, or some other relaxing aroma. You can use a diffuser or put two or three drops of essential oil into water and use a spray bottle to spread the scent in the room. The Namaste principles of care are very much in sync with the orientation of doula care and can easily be used by you as part of your work with a dying person.
Typically, the morning session is devoted to personal care. The person might be placed in a reclining chair with a blanket wrapped around their legs to make them feel comfortable and safe. If in bed, the person would be propped up with pillows. Their face and hands will be gently and slowly washed and their hair brushed. A man might receive a wet shave with warm water. The goal is not cleanliness but relaxation and pleasure. It should feel like a spa treatment to the person. Then lotion is applied gently. For people who enjoy it, this same care can be provided to the feet.
You might provide this morning care on your own or assist a family member. It is important for the person with dementia to hear how much they are appreciated and loved, and for them to be kissed and hugged at times during this session. If the person has no difficulty swallowing, drinks and soft, smooth treats, like yogurt or a smoothie can be offered. Drinks are important to keep the person hydrated.
During the afternoon time, you might focus your care on massage of the hands, feet, and scalp, soaking the feet in warm, oiled water, and reading to the person. You might also sing songs or play a nature DVD. At all times, you would speak to the dying person in a soothing and loving voice, telling them what you are about to do step by step. This kind of care in the afternoon can help calm the person at a time that they may usually experience some agitation.
As you can see, the Namaste approach utilizes some of the same approaches we offer in doula care, but it is delivered in a much more structured way that helps a person feel more secure and safe. This is very important for people with dementia, who can experience the world as frightening and confusing. So, when you work with people suffering from dementia utilize your doula tools along with the principles of Namaste Care in a consistent, structured approach. Above all, engage with these clients with a spirit of love and devoted engagement that takes into account who this particular person has been and what makes them unique.