By Eric Millman
With over 55 million cases of dementia worldwide—a number that’s expected to double every twenty years—most of us will be touched by the affliction in some way before long, whether we acknowledge it or not. In its most common form as Alzheimer’s Disease, or the lesser-known instances of vascular and Lewy body dementia, dementia is a devastating, as-of-yet incurable disease. It progressively impacts the victim’s capacity to perform activities of daily living, resulting in an average life expectancy of only 5-10 years.
But dementia’s impact on health and well-being is not limited to the patient alone.
Informal caregivers—namely the 80 percent of family and friends who provide unpaid care to the afflicted—are said to devote an average of five hours per day looking after their loved ones. Not only is this a staggering financial burden on families, its emotional impact is simply impossible to overstate. From dangerous increases in depression and heart disease to significant compromises in their own cognitive health, the associated impacts of dementia can also be a death sentence for caregivers who suffer from social isolation and fail to prioritize their own well-being.
From the film Matter of Mind: My Alzheimer’s, Carlos Olivas Jr. and his son Carlos Olivas III in front of their Sacremento home.
Thankfully, the status quo is quickly changing. As explored in the documentary Matter of Mind: My Alzheimer’s, a growing network of experienced caregivers and specialists are taking on the associated stigma and suffering of the disease, making themselves available as a resource for others who are just beginning their journey into dementia support.
To help address common misunderstandings regarding dementia and its associated challenges, we’ve turned to a select group of people whose lives have been directly impacted by the disease. We’ve asked them to share what they wish they’d known from the start, and what we all can do to support this community in need.
1) Doctors Don’t Always Know Everything
Despite major breakthroughs in our understanding and treatment of dementia, misdiagnosis is surprisingly common and can cause undue, and avoidable, harm. Dr. Steven J. Holtz is a retired neurologist from the University of California, San Francisco, School of Medicine who specialized in memory care. He stresses how important it is for loved ones to remain vigilant and proactive in defense of the patient, especially during the early stages of diagnosis.
“Our healthcare system is institutionally fragmented,” Holtz notes, “and there aren’t a lot of doctors who are skilled in [the detection and treatment of dementia], so caregivers have to, more than anything else, advocate for the patient and for themselves.”
Whether charting the long-term evolution of the patient’s symptoms or tracking potentially dangerous medicine interactions, it’s important for the caregiver to maintain an active role in the treatment plan while trusting themselves to know when something doesn’t seem to be working as it should.
2) Make Your Space “Dementia-Friendly”
Research points to a number of steps that caregivers can take to ensure that their home is as “dementia-friendly” as possible. Blue paint can help with mood swings, for example, while high-contrast colors between cabinets and walls can offer a boost in spatial orientation and depth perception.
From Matter of Mind: My Alzheimer’s, Sue Darrow and her partner Janice Goldberg in Manhattan.
As the patient’s sense of space diminishes, the elimination of such visual obstacles can be critical to their well-being. “Issues with depth perception can cause problems with distinguishing between flat surfaces and three-dimensional objects, as well as troubles with distance,” Jennifer Reeder, director of education and social services at the Alzheimer’s Foundation of America told Rosie Wolf Williams of Next Avenue. “This can cause concern for tripping, running into things that may lead to injury, and overall frustration and agitation.”
3) Honor Their Likes and Comforts, Even When They Can’t
Dementia chips away at what Holtz calls the ABCs—abilities, behaviors, communication—until, at a certain point, the patient may not resemble the person they used to be. Eventually, they will likely forget who you are, and their perception will no longer mirror reality.
Still, Maine resident Ruth Joyce (@dementiasteppingintoframe), a “sandwich caregiver” who looks after her mother with Alzheimer’s while also raising two children, stresses that in times of struggle, it can be extremely helpful to consider what the person liked before their diagnosis. “It is important to present to them things that used to make their heart happy,” she says. “If it is hats, get them hats, if it is cookies, get them cookies. If they hated plaid, don’t put them in plaid!”
4) Define Your Support System From the Start
As important as it is for the primary caregiver to maintain a proactive role in the patient’s life, it doesn’t mean they should be the only one pitching in. Knowing when and how to ask for help is extremely important for all involved, according to Diane Chew (@dementiacoachdiane), a part-time life coach and full-time caregiver to her husband, Ben, who was diagnosed with Lewy body dementia.
“You don’t have to do this alone—nor should you,” she says. “Build your support system early—before you desperately need it—including family, friends, neighbors, and professionals. Make a list of ways others can assist, whether it’s picking up groceries, staying with your loved one for an afternoon, or helping with legal matters like power of attorney.”
It might be tempting to turn away from society, to hide what’s happening, Chew adds, but it’s crucial to let people into your lives. “Accepting help isn’t a sign of weakness or disloyalty; it’s an act of love for both you and your loved one.”
5) Set Aside Ample “Me” Time
It’s not merely enough to find free time, notes Yienfanh Phommala, who had previously worked as a caregiver for an Alzheimer’s patient on a part-time basis and now serves as live-in caregiver for his father, who has dementia. Finding joy and solace in one’s free time could easily be a source of guilt, but Phommala stresses the importance of affording oneself “grace,” while also making time for “your mental and physical health, in whatever form that may take.”
Andrea from Matter of Mind: My Alzheimer’s has thoughts on this:
6) Homestays Aren’t Always in the Patient’s Best Interest
It might seem counterintuitive, or even callous, to send a loved one away from home to a professional memory care facility, but it very well could be what’s best for them. Holtz stresses that many patients are often actually much happier in full-time memory care, where they can be surrounded by professionals and peers.
“A patient who’s acting out all the time at home, where people might be constantly yelling at them and telling them not to do this or that and getting frustrated—that’s the worst thing for them,” Holtz says. “It’s going to make them more agitated [compared to memory care], where it’s nice and calm.”
7) Prioritize Their Peace of Mind Over a Singular “Reality”
Holtz stresses that it’s not your job to maintain the patient’s relationship with reality: all you can do is try your best to remain gentle and keep them calm. If they forget major tragedies, such as the loss of loved ones, being constantly reminded of such can cause great pain, as if learning such news for the first time. “If it puts them at ease, it’s worthwhile,” Holtz says. “Even if it means lying to them.”
Dr. Katie Norris (@creativeconnectionsdementia), who looked after two parents with dementia and now offers caregiver support via her podcast, Connected Companions, agrees. “Following a person’s reality does not mean we have to agree with the facts, but rather that we don’t try and convince them they are wrong, and we validate how they feel.”
Ultimately, the caregiver’s job is to ensure that the patient feels safe and unafraid, regardless of how your truth might differ from theirs.
Kristy Miller. a mom with Alzheimer’s featured in Matter of Mind: My Alzheimer’s, in her
apartment in Grand Rapids, MI.
8) Prepare to Say Goodbye Twice
Losing a loved one to dementia can occur long before death. When the time comes to finally, in a sense, “let go,” it’s normal for caregivers to experience multiple waves of grief, or mourn in unexpected ways. For example, many experience the loss of a sense of purpose—or even feel a sense of relief—with a loved one’s passing, notes social worker and senior specialist Donna Schempp of Family Caregiver Alliance. “You have to invent a ‘new normal’ from what you’ve been doing,” she says. “It’s OK to enjoy life again, to laugh and play. It’s not being disloyal to your loved one.”
Allow yourself to grieve in whatever form that takes, Schempp adds, even if the pain isn’t as pronounced as you might’ve expected. And when the time is right, volunteering in the caregiving community can prove helpful for all parties involved.
9) Don’t Be Afraid To Seek the Help You Need
Again, your needs may take on many forms throughout your caregiving journey. There may be times when you long for the support of those who know you intimately or other moments when it might help to vent to an empathetic stranger. It may be true that, in the world of dementia, no two experiences are exactly the same.
Still, the good news is there is someone well within reach who has experienced something similar, whether through neighborhood support groups or via social media. Just remember: the act of support has the power to heal in both directions. Whether your loved one is in the early stages of their diagnosis or approaching the end of their struggle, they benefit most when you’re at your best.
Even if you aren’t quite ready to share in your struggle, there are ample resources to help you better understand the impacts of the disease without leaving your home. For more information, the Alzheimer’s Association, the Alzheimer’s Society, the National Institute on Aging, and the Administration for Community Living are all great places to start. So, too, is using Matter of Mind: My Alzheimer’s as a communal discussion tool and to find inspiration in how three families navigate the disease in their own way.
Eric Millman is a writer currently based in Oakland, California. His work covers a variety of topics, from film to food history, and has been featured in outlets such as Japan Times, Wallpaper*, Atlas Obscura, Whetstone, and many others.
