We will turn our clocks forward this coming weekend, officially at two a.m. on Sunday, March 14. Of course, no one does it at that precise time. The general practice is just to move clocks ahead an hour when you go to sleep Saturday night, and don’t forget the clock in your vehicle! For most of us, […]Alzheimer’s Insights: Longer days ahead can affect different aspects of our physical and psychological health — L’Observateur
Tag Archives: Alzheimer’s
Alzheimer’s Insights: Longer days ahead can affect different aspects of our physical and psychological health — L’Observateur
While always a sobering overview, I believe it is important to review the annual analysis that the Alzheimer’s Association releases.
Some important takeaways:
- More than 6 millions Americans are living with Alzheimer’s
- Over 11 million Americans provide unpaid care for those with Alzheimer’s and other dementias
- 1 in 3 American seniors die with Alzheimer’s or other dementia
- This year, Alzheimer’s and other dementias will cost the nation $355 billion
- The value of the care unpaid Alzheimer’s caregivers provide is $257 billion
One other important statistic to note is the racial disparity in care. Discrimination in the health care setting can prevent or delay people getting the care they need. Half of Black Americans report such discrimination. Over 40 percent of Native Americans reported discrimination. Over a third of Hispanic and Asian Americans reported discrimination. I would also add to this the discrimination that women face in healthcare settings. Discrimination can take many forms, including a doctor not taking complaints of pain as seriously and assuming a symptom is emotional vs. physical in nature. I remember my own mother suffering at the hands of doctors who did not take her cancer pain seriously, instead assuming she was drug seeking.
As caregivers, we must be vocal and tireless advocates when faced with such discrimination. Don’t be afraid to ask for a different doctor if you are uncomfortable or dissatisfied with the care being provided. I’ve read many accounts from adult children who sought treatment for their elder parents with signs of dementia but the doctors shrugged off symptoms as the elder was able to present well for the duration of the appointment. Be persistent. While there is no miracle treatment for Alzheimer’s or other dementias, there are medications and treatments which may help in the earlier stages. That is why receiving a correct and timely diagnosis is crucial.
Plan ahead for your elder loved ones who live alone and wish to age in place. You will want to take your time in vetting care workers and finding one that is the right fit. Kay Bransford offers helpful tips on her blog.
Most of the individuals I work with that are still in their home want to stay there. The ongoing COVID issues have made many individuals and their families second guess community care. 472 more wordsFinding a Live-In Arrangement That Works — Dealing with Dementia
We could all use some good cheer and a thoughtful gesture after such a challenging year. It you are looking to get a gift for a dementia caregiver, here are a few ideas.
Self-care: Family caregivers are notoriously bad about taking care of their own needs, but caregiver burnout puts everyone at risk. Caregivers are often short on alone time, so take that into consideration when choosing gifts. A candle with a soothing scent, calming tea, music to lift the spirits, a book of daily inspirational posts —choose something that will allow a caregiver to enjoy a momentary respite even while they are isolating at home with their loved one. Take a look at my CBD gift guide for other self-care gift ideas.
Homemade gifts: Whether it’s a favorite dish, a knitted item, a phone call or a handwritten card, showing you care in your own special way makes for a thoughtful gift. Family caregivers, especially of those with dementia, often feel isolated as friends drift away, uncertain how to navigate cognitive impairment. Simply reaching out with a small token of affection is worth more than you can imagine.
Helping hand: If you are a handy person, consider offering your services to repair something in or around the caregiver’s home (of course taking precautions due to the pandemic.) Or consider a subscription to a meal delivery service, or a gift certificate for grocery delivery or delivery from their favorite restaurant. Anything that will ease the burden of maintaining the household will be appreciated.
Genealogy: Some people with dementia remember the past better than the present. A gift for a genealogy service or scrapbooking materials for those who are not digitally inclined can be a gift for both the dementia caregiver and the loved ones they care for. Capturing those family memories is priceless. Gathering old photos and assembling them while remembering family stories can be a wonderful bonding activity. I find both the online services and scrapbooking to be enjoyable. This is also a good project to do while housebound due to the pandemic and/or inclement weather.
My father began to struggle with money issues years before other signs of dementia became apparent. He would argue with clerks because he thought they overcharged him and had trouble paying for items in cash, especially if change was involved. He began to carry a large wad of bills around and would dump large piles of coins on the bed in an attempt to “sort” them but there was no organization taking place. Your loved ones may have more subtle signs of financial issues due to cognitive decline, but it is important to monitor.
Read more below from Kay Bransford of Dealing with Dementia.
Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis. SIX YEARS. You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care…The Link between Dementia and Mismanaged Finances — Dealing with Dementia
There has been so much bad news lately that I wanted to spotlight a story about what the younger generation is doing to support dementia research. A group of teen girls in Ireland used the pandemic lockdown for a worthwhile cause.
The mentor’s mother had dementia, which helped inspire the team to create the Memory Haven app. Designed for use by both people with dementia and their caregivers, it has features designed to address three main issues: memory loss, difficulty with recognition and speech impairment. I loved how thoughtful the app is, using tools like facial recognition and music to help lift the moods of those who are feeling down.
While the teens are a STEM (science, technology, engineering and mathematics) success story, they unfortunately faced sexism and racism along the way. I hope their inspirational story will encourage youth around the world to support dementia research.
You can learn more about the app and see it in action in this BBC report.
I was moved this week when I watched the video of a Maryland woman who was distraught because she was told by hospital staff that she would have to leave her mother-in-law, who was in severe pain and has Alzheimer’s, alone in the emergency waiting room due to COVID-19 restrictions.
As a former dementia caregiver, I can empathize with the helplessness and the frustration that Laura Kramer felt. It’s ridiculous that Kramer had to take her mother-in-law to another county in order to receive treatment and be at her side as her family caregiver. You can watch her emotional plea.
My own father had multiple trips to the emergency room in the last year of his life while he was a resident at a memory center. Their procedure was also to leave the patient at the ER once admitted because they didn’t have the staff to wait with the resident. I often thought about how confused and scared my father must have been, alone in a chaotic emergency room atmosphere.
The good news is that Kramer’s experience forced the hospital to revisit its guidelines and admit that they had made a mistake. Of course COVID-19 restrictions are necessary in a healthcare setting, but no-exception policies could have deadly consequences when it comes to caring for those with cognitive issues. Kramer’s actions should be a role model for other caregivers who find themselves in similar situations.
Totally agree with Lauren. While I experienced some sense of relief that dementia no longer had control of my father’s mind, his death was still a profound loss.
How many times have you heard someone say, “My loved one died. Well, she was sick and we knew it was coming, but still…”? Why do we feel the need to offer that explanation? Why do we feel the need to minimize our loss by saying that it was expected? Why do we diminish our […]
I’m always on the lookout for films dealing with caregiving issues, Alzheimer’s and other dementias, as well as those that offer an honest look at growing older. I came across two interesting movies this week that I want to pass along to kick off your weekend. The first is Senior Love Triangle and the second one is Ice Cream in the Cupboard.
These films offer a unique perspective and won’t be to everyone’s liking. For those who prefer to keep their movies more in the PG range with no profanity, you may want to take a pass. I found both films to be moving and thought-provoking, offering a raw yet empathetic look at the challenges that aging can present. More films are tackling topics such as aging, dementia, and family caregiving and I wholeheartedly support this trend.
Senior Love Triangle is based upon a photo book by Isadora Kosofsky. The story and moving images follow an 84-year-old man who is attempting to balance his relationships with 81-year-old Jeanie and 90-year-old Adina, with nursing homes serving as the backdrop. Dementia, other mental illness and how vulnerable seniors are preyed upon also are part of the storyline. Adult children often have a hard time with their elder loved ones finding romance in the care center environment, but this movie shows how important such affection and human connection is to older people.
Ice Cream in the Cupboard is about a middle-aged couple whose lives change forever after the wife is diagnosed with early-onset Alzheimer’s in her mid-fifties. The movie is based upon a true story. I appreciated how realistically the film depicted the challenges in dementia caregiving. It never shied away from the more brutal, violent aspects and never sugarcoated what Alzheimer’s caregivers may face on their journeys. However, there is also much love and devotion on display.
Both of these movies are available on video on demand. If you’ve seen these films, I’d love to hear your thoughts.
I recently was interviewed for a new caregiving project called Open Caregiving. The website serves as a collection for caregivers to share their experiences and offer advice to other caregivers. I was happy to participate.
If you would like to share your caregiving story, fill out this form.
One of the pieces of advice I offered that proved to be a key for me in thinking about my father’s dementia was to learn how to accept the “new normal.” While it is natural to lament what your life was like before, who your loved one with dementia was before the disease changed them, it is not helpful to be consumed with the past. Cherish those memories and try to focus on the present.
This was very hard for my mother and I to do as my father’s Alzheimer’s disease progressed further. My mother couldn’t help but correct all of the mistaken memories or gibberish that came out of my father’s mouth and I felt shame and embarrassment for my father’s state of mind. I knew how mortified he would be if he could see himself in that state of mental decline. I discuss this further in my book, The Reluctant Caregiver.
But what helped once my father was in the memory care center was simply to visit him and enjoy his company in that moment. If that meant getting him a cup of coffee or navigating him around the outdoor area for a stroll, then that was enough. I would no longer be able to discuss politics or sports with my father but I could still hold his hand and tell him I loved him.
I hope you are finding ways to adjust to the new normal as you wind your way through your own journey as a dementia caregiver.