It’s not uncommon to feel ill-equipped to serve as primary care partner for your loved one with dementia. In hindsight, you may think, “I’ve made lots of mistakes,” “I wish I’d done more research,” “If only I’d paid more attention to little signs,” “I should have had an action plan,” “I really didn’t know what was coming,” “Now I have a lot of guilt.”
Although there were early warning signs — Dad was struggling to remember words or Mom was constantly repeating herself — those were chalked up to “old age.” Then things boiled over. A wife left a burner on, this time resulting in a fire. A mother stepped on the accelerator instead of the brake, causing an accident. A husband began lashing out, accusing his spouse of having an affair. A father wandered away from home, getting seriously lost.
“Don’t wait for a crisis,” advises Sandy Markwood, CEO of the National Association of Area Agencies on Aging (n4a). Markwood, whose mother lived with dementia, stresses there are medications and interventions that may help, along with a growing number of resources to prepare and support care partners.
Seeking and Understanding a Dementia Diagnosis
An essential first step is to receive a dementia diagnosis and understand what it means. Neither may be so simple, warns Karen Love, executive director of the Dementia Action Alliance (DAA). Because there is no cure for it, medical professionals tend to view dementia as a “death sentence,” says Love, whose father lived with Alzheimer’s. As a result, they resist offering a diagnosis, passing patients on from one specialist to the next.
Unfortunately, seeing specialists can be cost prohibitive, says Yolima Chambers, health and wellness department administrator at Minneapolis’ Centro Tyrone Guzman, a Latino community center. “For those who don’t have health insurance, we refer them to community clinics, but primary doctors don’t diagnose, they can’t diagnose. It has to be a neurologist or another specialist,” notes Chambers.
Due to the expense, a diagnosis necessary for treatment may be delayed, placing the person and family in greater danger. But even when there is a diagnosis, understanding what it means is a common challenge. “What should happen,” says Love, “is you walk into the doctor’s office, they tell you what you have, what it means and how to feed your soul.” However, medical professionals are not always skilled at explaining the diagnosis or what comes next.
Because a person can’t count on doctors to be capable communicators, it’s crucial to know what other resources are available. Several can be found online at Dementia Action Alliance’s Resources Center.
People of color and immigrants face additional cultural and language barriers, as well as higher rates of dementia. Latinos are 1.5 times as likely as whites to experience dementia, and African Americans twice as likely. As a result, ACT on Alzheimer’s community partners in Minnesota are designing innovative programs targeting specific populations. For example, the Alzheimer’s Latino Collaborative at Centro wrote and staged a play, based on three families’ experiences, followed by panel discussions.
A Care Partner Mindset
“Words matter,” says Love, so viewing oneself as a “care partner,” not “caregiver,” is crucial. The person with dementia is “impaired,” she says, “and may come and go,” but is still there. You don’t want to rob him or her of dignity and independence; denying respect has detrimental effects on the brain, something Love first observed in high school while working in a nursing home. Residents with dementia were routinely dismissed as “senile,” she noticed, inanimate objects with whom staff did not engage, leading them to shut down further.
Unfortunately, stigmas remain, says Love, perpetuated by popular culture, advertising, news reporting and the medical community.
Once a dementia diagnosis is made, care partners need to make decisions and design an action plan together. Markwood’s advice: “Resist the urge to take over everything.” Doing so can take incentive and joy away from the person living with dementia. Among conversations Markwood recommends having following the diagnosis are:
- Managing finances
- Access to checkbooks and credit cards
- Legal planning
Another subject, and one that may be the toughest, says Sandra Reyes, Wise Elders coordinator at Centro Tyrone Guzman, is the advance care directive. (An advance directive is a legal document in which a person describes what health decisions should be made if he or she no longer has the capacity to do so). This is a conversation Reyes had with her mother after she was diagnosed with Alzheimer’s.
Learn Simple Interaction Techniques
It’s incumbent upon care partners to learn as much as they can about the disease, how it progresses and new ways to interact. “There are so many things a care partner can do to ensure that a loved one is safe and has a good quality of life,” says Love, “and they’re often very simple.”
Understanding neuroplasticity (the ability of the brain to respond to change in response to illness or injury) and how it can spur creativity, learning and communication is key. “Discover what connections points there are,” says Love, who enjoys recounting stories of the profound impact simple gestures can have. Reading Richard Fenker’s Don’t Rain On My Parade: Living a Full Life with Alzheimer’s is one of the first things she recommends. “If you don’t think positively,” Love explains, “you shut the person down.”
Among the simple things a care partner can do:
- Eliminate background noise whenever possible
- Maintain eye contact
- Speak in a slow, calm manner
- Play soft music
- Look at photo albums together
- Recognize the power of touch
Blogs, where others share their personal experiences and what they’ve learned, can be extremely helpful, too, especially for those having just received a diagnosis. Our True Colors: A Family’s Journey with Dementia is the collaboration of a mother and daughter recounting what they’ve learned about various forms of dementia through caring for their husband and father.
And remember that listening to, and learning from, those living with dementia is fundamental, since they’re the experts about the experience. This is a guiding idea of Dementia Alliance International.
Social Ties Are Important
One of the biggest challenges, and one of the most important to confront, is maintaining social connections.
“One thing we hear all the time,” reports Markwood, “is that people stop visiting [loved ones with dementia] because they don’t know about the disease and don’t know what to do.” Enlist the support of family, friends and neighbors, she says. “Be upfront about the diagnosis and tell people how they can help,” advises Markwood.
Most important, don’t let fears about how you and your loved one might, or might not, be accepted lead to “cloistering.” Fear often keeps partners from stepping out into the community, going to religious services, the grocery store, medical appointments, the barber shop or beauty salon, in turn depriving them of key sources of support.
Dementia Friendly America (DFA) is a collaboration of nearly 30 organizations, including n4a, DAA, and ACT on Alzheimer’s, charged with working with local governments, transit systems, businesses and health care systems to make communities more welcoming. DFA’s goal is to have a presence in all 50 states by the end of 2017.
Other innovative forms of support continue popping up. Dementia Mentors is an international project that matches a person newly diagnosed with someone of a similar background, anywhere in the world, who’s been living with the disease.
Consider Support Groups
Seeking out others on a similar journey leads many spouses and family members to find support groups in their area.
“You can read all you want,” says Markwood, “but listening to other people and learning from them what’s been helpful is invaluable. Going through the emotional pain with others is important.”
Because the middle of the night may be the only time care partners have to themselves, online support groups can be an attractive alternative. “Just be careful and filter, like anything else online,” says Markwood.
Finally, the Family Caregiver Alliance offers this reminder: “Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important — and one of the most often forgotten — things you can do….” Its website provides a host of self-care tips.
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