{"id":31599,"date":"2025-05-05T09:00:33","date_gmt":"2025-05-05T16:00:33","guid":{"rendered":"https:\/\/www.pbs.org\/independentlens\/?post_type=blog&p=31599"},"modified":"2025-05-06T11:47:04","modified_gmt":"2025-05-06T18:47:04","slug":"nine-essential-tips-dementia-caregivers-need-to-know","status":"publish","type":"blog","link":"https:\/\/www.pbs.org\/independentlens\/blog\/nine-essential-tips-dementia-caregivers-need-to-know\/","title":{"rendered":"Saying Goodbye Twice: Nine Essential Tips Dementia Caregivers Need to Know"},"content":{"rendered":"

By Eric Millman<\/strong><\/h4>\n
\n

With over 55 million cases of dementia worldwide\u2014a number that\u2019s expected to double every twenty years\u2014most 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\u2019s 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\u2019s capacity to perform activities of daily living, resulting in an average life expectancy of only 5-10 years.<\/p>\n

But dementia\u2019s impact on health and well-being is not limited to the patient alone.<\/p>\n

Informal caregivers\u2014namely the 80 percent of family and friends who provide unpaid care to the afflicted\u2014are 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.<\/p>\n

\"From

From the film Matter of Mind: My Alzheimer’s,<\/em> Carlos Olivas Jr. and his son Carlos Olivas III in front of their Sacremento home.<\/p><\/div>\n

Thankfully, the status quo is quickly changing. As explored in the documentary Matter of Mind: My Alzheimer\u2019s<\/strong><\/em><\/a>, 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.<\/p>\n

To help address common misunderstandings regarding dementia and its associated challenges, we\u2019ve 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.<\/p>\n

1) Doctors Don\u2019t Always Know Everything<\/h4>\n

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.<\/p>\n

\u201cOur healthcare system is institutionally fragmented,\u201d Holtz notes, \u201cand there aren\u2019t 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.\u201d<\/p>\n

Whether charting the long-term evolution of the patient\u2019s symptoms or tracking potentially dangerous medicine interactions, it\u2019s important for the caregiver to maintain an active role in the treatment plan while trusting themselves to know when something doesn\u2019t seem to be working as it should.<\/p>\n\"Sign<\/a>\n

2) Make Your Space \u201cDementia-Friendly\u201d<\/h4>\n

Research points to a number of steps that caregivers can take to ensure that their home is as \u201cdementia-friendly\u201d 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.<\/p>\n

\"Sue

From Matter of Mind: My Alzheimer’s<\/em>, Sue Darrow and her partner Janice Goldberg in Manhattan.<\/p><\/div>\n

As the patient\u2019s sense of space diminishes, the elimination of such visual obstacles can be critical to their well-being. \u201cIssues with depth perception can cause problems with distinguishing between flat surfaces and three-dimensional objects, as well as troubles with distance,\u201d Jennifer Reeder, director of education and social services at the Alzheimer\u2019s Foundation of America told Rosie Wolf Williams of Next Avenue. \u201cThis can cause concern for tripping, running into things that may lead to injury, and overall frustration and agitation.\u201d<\/p>\n

3) Honor Their Likes and Comforts, Even When They Can\u2019t<\/h4>\n

Dementia chips away at what Holtz calls the ABCs<\/em>\u2014abilities, behaviors, communication\u2014until, 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.<\/p>\n

Still, Maine resident Ruth Joyce (@dementiasteppingintoframe<\/a>), a \u201csandwich caregiver<\/a>\u201d who looks after her mother with Alzheimer\u2019s 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. \u201cIt is important to present to them things that used to make their heart happy,\u201d she says. \u201cIf it is hats, get them hats, if it is cookies, get them cookies. If they hated plaid, don\u2019t put them in plaid!\u201d<\/p>\n

4) Define Your Support System From the Start<\/h4>\n

As important as it is for the primary caregiver to maintain a proactive role in the patient\u2019s life, it doesn\u2019t 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>), a part-time life coach and full-time caregiver to her husband, Ben, who was diagnosed with Lewy body dementia.
\n\"Dementia<\/p>\n

“You don\u2019t have to do this alone\u2014nor should you,” she says. “Build your support system early\u2014before you desperately need it\u2014including family, friends, neighbors, and professionals. Make a list of ways others can assist, whether it\u2019s picking up groceries, staying with your loved one for an afternoon, or helping with legal matters like power of attorney.”<\/p>\n

It might be tempting to turn away from society, to hide what\u2019s happening, Chew adds, but it\u2019s crucial to let people into your lives. “Accepting help isn\u2019t a sign of weakness or disloyalty; it\u2019s an act of love for both you and your loved one.”<\/p>\n

5) Set Aside Ample \u201cMe\u201d Time<\/h4>\n

It\u2019s not merely enough to find free time, notes Yienfanh Phommala, who had previously worked as a caregiver for an Alzheimer\u2019s 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\u2019s free time could easily be a source of guilt, but Phommala stresses the importance of affording oneself \u201cgrace,\u201d while also making time for \u201cyour mental and physical health, in whatever form that may take.\u201d<\/p>\n

Andrea from Matter of Mind: My Alzheimer’s<\/em> has thoughts on this:<\/p>\n

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A post shared by Andrea Krystal Hughes (@itsandreakrystal)<\/a><\/p>\n<\/div>\n<\/blockquote>\n