Navigating Alzheimer’s: Facts and Support Tips for Doulas
by Cloud Conrad and Loren Talbot
Navigating Alzheimer’s: Facts and Support Tips for Doulas
November calls to attention the designation of both National Alzheimer’s Disease Awareness Month and the Alzheimer’s Association National Family Caregivers Month. According to the World Health Organization, 55 million people worldwide are currently living with dementia, and 10 million people receive new diagnoses annually. Dementia is a syndrome in which cognitive function deteriorates beyond what might be expected from the usual consequences of biological aging. While the number-one risk factor for dementia is age, young onset dementia accounts for up to 9% of cases. Alzheimer’s disease is the most common form of dementia and may contribute to 60% to 70% of dementia cases.
One in five households in the United States have either a person living with Alzheimer’s or other dementias or a caretaker providing support to someone with the disease. As the baby boomer population ages over the coming decades, the number of people living with dementia will soar. In fact, without a preventative solution, we are likely to see such increases that one in two households will be affected by Alzheimer’s or other dementia over the next 10 to 20 years.
As with many diseases, Alzheimer’s affects people differently, and women are disproportionately impacted—two out of three people with dementia are assigned female at birth. Additionally, African American people are twice as likely to have dementia than White people, and individuals of Hispanic descent are 1.5 times more likely than White people to be diagnosed with the disease. As folks increase in age, so does their chance of a diagnosis.
Understanding signs of Alzheimer’s and other dementias is important for doulas in order to provide person-centered work in the end-of-life stages. The medical community describes the progression of dementia in numerous ways. “The Alzheimer’s Association describes dementia’s progression in three phases—early, middle, and late—for several reasons,” says Kim Franklin, Program Manager for the Alzheimer’s Association, Georgia Chapter. “Everyone’s progression is different, the lines between stages may seem blurry, stages often overlap, and progression is not always linear.”
Dementia affects everyone differently. Some people will lose the ability to talk in the end stages, while others may remain conversant until the end. Some people will seem to progress quickly from one phase to the next, while others linger for months or even years in a particular phase before advancing to the next phase.
A Change in Communication Means a Change in Relationship
As dementia affects one’s ability to communicate, it is important for doulas, caregivers, and loved ones to be aware of the signs of cognitive decline. While early dementia will manifest differently in each person, those who are diagnosed early are able to plan for their legal, health, and end-of-life decisions. Early detection leads to more autonomy and personal preferences in end-of-life care. It can also open communication between caregivers and lessen future disagreements.
No other disease affects relationships and muddies communication like dementia. Good communication requires many of our cognitive abilities: comprehending what others are saying; drawing on facts, history, and emotions to respond; formulating that response; considering the consequences of one’s response; executing that response; and repeating the cycle. When this decrease in cognitive skills affects people’s ability to communicate, their relationships will be challenged. Relationships also change because the underlying symptoms of dementia may alter a person’s behaviors before other, more obvious signs emerge. Without awareness of dementia’s potential presence, loved ones may attribute erratic or hurtful behaviors to other causes, such as a midlife crisis, an intentional desire to cause harm, etc. Such assumptions may make it even more difficult for families to resolve the fallout from erratic or hurtful behaviors if they don’t understand how dementia affects reasoning and behavior.
“The person living with dementia loses control of so many things,” says Melora Jackson, Virtual Dementia Tour® clinical manager for Second Wind Dreams, a nonprofit focused on changing the perception of aging. “Having someone who can assist the person and their care partners with negotiating the symptoms of dementia will help preserve a sense of control and relationship.”
Here are some symptoms that may affect communication and relationships:
Visual: trouble with facial recognition and object recognition, restricted peripheral vision, trouble reading and remembering what was just read
Linguistic: loss of vocabulary, difficulty producing speech, and difficulty processing others’ speech
Nonverbal auditory: retained ability to process sonic/rhythmic data, such as music
Tactile: loss of ability to process touch, misinterpretation of tactile sensations, inability to detect/locate/report pain
Executive function: difficulty making decisions and/or making poor decisions, problems sequencing tasks or following directions, lack of self-inhibition or empathy, inappropriate language or behavior
Short-term recall: problems remembering new information, problems with navigation, mixing past and present, difficulty comprehending events to take place in the future
Self-preservation: elevated anxiety becomes default mode, delusions create suspicion/accusations
Caregiving for those living with dementia most often falls to unpaid family members. On average, there are two to three family caregivers overseeing care for each person living with dementia. Statistically, two out of three family caregivers are female. A Stanford University School of Medicine article speaks to the lack of affordable in-home care options in the United States other than unpaid family members. Considering that many caregivers are loved ones who are also grieving the loss of the connection with the person with dementia and the life they shared prior to the diagnosis, the stressors and impact on caregivers can be plentiful.
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” ―Maya Angelou
As the disease progresses, facts matter less and less for people with dementia, while the way a person makes them feel becomes increasingly important. This can go beyond simply being pleasant—it can encompass truly being with the person, wherever they might be. “Extra attentiveness to their unique experience also necessitates the doula to refrain from imposing reality orientation,” says Leslie-Alin Tewes, a life care consultant specializing in aging and an end-of-life doula. “This is the time to be with that individual, wherever and whenever they are at that moment. It’s not a time to fact check. Assume that the client can hear, smell, feel everything…especially your generous, unconditional positive regard.”
As communication and reasoning skills fade, people with dementia rely more and more on body language, facial expression, and voice tone and inflection to comprehend caregivers’ meaning. “The doula should tune up her supersenses so that subtle, nonverbal signs of communication are noticed and acted upon,” suggests Leslie-Alin. “These might manifest a grimace of discomfort, or reaching for hand-holding, pulling away from touch, shivering, and even tugging on the blanket because its weight is too much pressure on one’s chest. Is the client squinting from bright overhead lights that inhibit vision or contribute to headache?”
Understanding the Doula’s Role With Dementia Clients
Legacy work can still be incorporated into the doula’s service with dementia. “We all want to be remembered for who we were and not for our dementia,” Melora says. “We want to honor the person, not the disease that changed our loved one.” End-of-life doulas might approach legacy work in a more family-centric way than they usually would when working with a client who has dementia. It’s important for EOL doulas to assess the cognitive skills of the person diagnosed with dementia and adjust their work balance between the person dying and the loved ones to honor the ideals for facilitating meaningful death.
As the disease progresses, the doula’s role will also change, making it particularly important to engage the doula as early in the dementia progression as possible, better enabling effective implementation of the INELDA three-phase EOLD model. However, a doula informed in dementia-specific care may be able to foster a meaningful, dignified death to support a person with dementia and their loved ones in any phase of the disease. INELDA trainer Valoria Walker states, “Individuals with Alzheimer’s deserve a quality dying experience regardless of if they have the ability to communicate it. As EOL doulas build trust with patients and families, the planning phase is an appropriate starting point to initiate conversations specific to Alzheimer’s disease advance directives.”
Every state has different laws for advance directives. Knowing the specifics of state rules for the area your client resides in is an essential planning piece. “Take the opportunity to educate yourself on what to know about advance directives for people with dementia. Planning and documenting the person’s wishes before they become cognitively impaired can be a tremendous guide to help families honor their loved ones,” Valoria says.
This urgency was mirrored by INELDA-certified doula Martha Heymann. “My client was diagnosed a few months ago with Alzheimer’s, and they wanted to get their end-of-life plan and guided imagery sessions noted before their capacity was further diminished. This work needed to be done very quickly.” While support will sometimes look different for end-of-life doulas working with dementia clients, the doula’s ability to be present for that individual is essential. “Meet them where they are,” says Martha. “Be ready for ebbs and flows from present to past during a single conversation. Have your sea legs. Know you cannot correct the course, but you can stay steady, and that your calm can float on the breeze to your client and their support circle.”
When working with a client with dementia, the doula may deeply support the family and caregivers. Legacy work that may have previously been done directly with the clients can be modified to become a project between caregivers and clients. Even if the individual is only able to look at, listen to, or feel the final legacy project, the process can be rewarding for all individuals involved. For example, a collaborative playlist of a client’s favorite music could elicit memory and emotions for both the caretakers and individuals with dementia.
Using the INELDA RUGS model (Regrets, Unfinished Business, Guilt, and Shame) will look different when serving people with dementia. This work might be more family-centric, given that the behavioral changes dementia causes may create hurt and misunderstandings. If the client is unable to work through RUGS exercises, offering this service to the caregivers may allow them to further process the changes they are experiencing with their loved ones. Doulas may be able to support families as they work to reconcile unfinished business that may have been exacerbated by dementia’s symptoms.
An end-of-life doula can be an essential component for those suffering from dementia and Alzheimer’s at end of life. The doula can provide emotional, spiritual, and physical support to everyone involved, assisting both clients and caregivers. “Towards the end-of-life, when supporting those with cognitive impairment, whether from age-related memory decline or Alzheimer’s disease, it’s vital to be especially patient and attentive,” says Leslie-Alin. “Giving of unhurried time and unfrazzled attention is the point of this work. It is the gift.”