I hope those dementia caregivers who wonder if they are doing enough or doubt their capabilities of caring for their loved one take the time to read the above post, “Dementia Does What It Does” on the When Dementia Knocks blog. Elaine captures quite eloquently the progressive march that dementia eventually takes, no matter what cures or solutions you throw at it. Elaine’s message may sound pessimistic, but its intention is to give yourself a bit of grace and self-compassion. When you accept the current reality of a dementia diagnosis, you may blame yourself less when your loved one continues to decline, in spite of your best efforts.
There is some tentative hope of more effective treatments on the horizon, but for now, just know that you are doing your best as a caregiver.
After learning about colors as a child, we may take their appearance for granted, unless you are an artist. But colors can take on different meanings for those with dementia, and understanding those changes can be helpful as a dementia caregiver.
I remember seeing the visual impact of dementia in person when visiting my parents. We were in a building with an elevator, and my father took a very large step across the threshold of the elevator, where a black mat was placed. As Linda Slaton Anderson points out in this article published in Today’s Caregiver, “some therapists recommend placing black mats in front of doors or stairs since Alzheimer’s patients perceive them to be holes and thus tend to avoid walking on them.” Clearly, my father experienced that “black hole” visual disruption.
While some changes in processing colors can be frightening for both those with dementia and their caregivers, colors can also be used in positive ways. For example, those with dementia with diminished appetite may benefit from using red dishes on a white tablecloth, due to the higher contrast attracting attention to the food on the plate.
“Colors are processed by our brains more quickly than words,” Anderson notes. As those with dementia lose their language abilities, colors may remain a way to convey feelings and encourage engagement.
Color choice can impact mood, which those with an interest in interior design understand well. This applies to those with dementia as well. Blues and greens can provide a calming, soothing effect, while orange and yellow are cheerful colors that can lift one’s mood.
For caregivers trying to decode or address negative behavior in their loved one with dementia, consider the role color may be playing.
Happy New Year. I hope you were able to enjoy time with family over the holiday season.
Once the holidays are over, our elder loved ones may miss the social interaction and companionship. I know my mother deeply missed the daily companionship of my father after he moved into the memory care center and then died a year later. There was an active senior community center where she lived, but my mother refused to go, saying she didn’t want to be around “old people.”
Home Care Matters had good tips on helping elders connect with community in their newsletter. They also offered additional tips about keeping elders engaged during the winter months when it may be difficult to leave the house for socializing. Some churches offer transportation service for those who need assistance to and from services. Volunteer work is another great way to connect with the community. How one socializes and stays engaged with their community may take some creativity on the part of family, but the mental, emotional, and health benefits are well worth it. You’ve likely seen the reports about the health consequences of the loneliness epidemic, including an increased risk of dementia.
What about our elder loved ones who are introverted or don’t enjoy the typical senior community center activities? As an introvert myself, I’m not a big fan of in-person group activities, but I found that I do enjoy online activities like virtual book clubs. An online women’s healing circle has been beneficial in supporting my emotional wellbeing during the pandemic. I also enjoyed an in-person knitting group I attended last year a couple of times and may return to that in the future. For me, the key is to use my hobbies and interests to find communities where we share a common interest.
What about those who are resistant like my mom? Sometimes, you have to let your loved ones follow their own way. For example, my mother used errands to socialize with everyone from the bank manager to the Mexican restaurant server to the shuttle driver. I appreciate those people who took extra time to interact with my mother. They probably don’t realize how much of a positive difference they made in my mother’s life.
Parts of the US are already experiencing winter weather. It’s important to ensure that loved ones with dementia don’t wander when the weather turns frigid. Each winter, there are cases of those with dementia who fall victim to the elements after wandering from home or a care facility.
My father was a wanderer. His lifelong love of walking had kept him lean, but his desire to move became a liability as his dementia progressed. Dementia takes a physical toll as well, so as Dad became frailer, he was more prone to injuries from falls. While he still lived at home, my mother had to watch him like a hawk. One time, she attempted to take a brief bath, and Dad slipped away. Mom immediately called me, frantic. It was going to be dark soon, and turning colder. In my father’s case, there was a happy ending. Mom called the police who were responsive and tracked my father down not too far from my parents’ condo community. Crisis averted that time.
My father would wander a few more times while he still lived at home, including one infamous time when my mother was in the dentist’s chair. Once he moved to the memory care unit, he was behind a locked door secured by a code. He still wandered, up and down the halls, and outside in the garden area when weather permitted, but at least he was contained to the facility.
It’s such a helpless feeling when a loved one is lost. I’m grateful for first responders and others who helped locate my father when he wandered off.
There are things caregivers can do proactively to reduce the risk of wandering this winter.
Door locks: One of the easiest solutions is to configure your home’s door locks to one in which you lock with a key from the inside. Then keep the key on a chain around your neck or in another inaccessible place from your loved one with dementia. If you prefer a more high-tech solution, you could choose something like a fingerprint lock or one that requires a code. Consider a door chime or bell to signal when one exits the home.
Trackers: I bought one of the earliest renditions of GPS-powered tracking tags for my father, but the device was cumbersome to use at the time and didn’t have good reception in the mountain town where my parents lived. I’m happy to say that such devices have come a long way since then. If high-tech solutions aren’t an option, even a simple ID bracelet or necklace can be helpful. For long-distance caregivers, seek devices that allow you to monitor your loved one’s movements from your phone, which can offer some peace of mind.
Behavior modification: Track your loved one’s wandering episodes. Do they happen at a certain time of day? Sundowning is a common issue for those with dementia, and the longer period of darkness during the winter can exacerbate the issue. My father struggled with bedtime and sometimes would get up in the middle night, change into day clothes, and sit in his chair in the living room until morning. Consider changing up your schedule and finding enjoyable activities to do together during this time period. Talk to the doctor about medication or other therapies.
If your loved one does wander away, try not to panic. Conduct a quick search of the immediate area, and if there’s no sign of the individual, contact authorities. 911 should be able to direct you to any specific community programs for these situations, if they exist in your area, or like in my father’s case, patrol officers handled the situation. Keep a folder on your phone with a recent photo of your loved one, nearby places they may be prone to going to, a list of medical issues and medications, and the contact information for area hospitals.
Thanksgiving was one of my family’s favorite holidays. My father loved the food and my mother enjoyed preparing our small family’s meal. If you are hosting or attending a Thanksgiving dinner with a loved one with dementia, it’s important to consider such an occasion from the perspective of someone with cognitive challenges. By planning ahead, remaining flexible, and adjusting your expectations, you increase the chances of everyone having a good time.
Here are important aspects to consider:
Group setting: How many people will be attending the gathering? Is your loved one with dementia comfortable with large groups or do they become easily overwhelmed? What about children or pets? Some people with dementia light up and become more engaged in the presence of children and pets, others may find their energy overwhelming or irritating.
Sitting at a large table can make it difficult for those with dementia to keep up with multiple conversation streams. One solution could be to have multiple smaller table settings to encourage engagement and reduce distractions.
Dietary needs: Dementia can impact a person’s palate, so don’t be surprised or insulted if old favorites are not greeted with much enthusiasm. If dietary restrictions are a consideration, making a plate instead of self-serve may be the best option. Monitor alcohol intake, especially if your loved one takes medications that may interact with alcohol.
Those in the middle to latter stages of Alzheimer’s and other dementias may begin having problems managing cutlery. Consider cutting up food into bite-sized pieces for ease in eating.
One of the more sensitive and heartbreaking aspects of dementia is when someone who loved to cook loses the ability to safely navigate the kitchen and follow recipes. For those who still want to contribute to the Thanksgiving feast, find kitchen tasks that match their ability level. Remember that it’s about the family spending quality time together even more than the food.
Meal presentation: One thing in common with Thanksgiving dinner spreads is that the table is often loaded with multiple dishes. It can be difficult to know where to start even for someone without dementia! Consider using adaptive dinnerware designed for those with dementia.
If your family is hosting and your loved one is no longer able to cook safely, keep them involved by helping set the table.
Need for quiet time: Be prepared to give your loved one a space where they can decompress if necessary. If you are at someone else’s home, perhaps a guest bedroom or if the weather cooperates, a breath of fresh air on the porch could be ideal. Sometimes, a drive around the block may help re-set one’s mood, and worse case scenario, leaving a gathering early is always an option.
Remain flexible and accept that certain beloved family traditions may need to be revamped. After such a social event, make sure your loved one has plenty of time to rest and recover.
By taking these aspects of holiday meal planning into consideration, loved ones with dementia will continue to feel involved and appreciated. Even those who have diminished verbal skills can soak up the love in the room.
November is National Family Caregivers Month. While caregivers can use support all year long, this is a great time to step up efforts and let the caregivers in your life know that you appreciate them.
If you are looking for inspiration, don’t miss the airing of Wine, Women, & Dementia on PBS. Check with your local PBS station for more details. You can read my review of how this caregiver community grew online and in-person to foster authentic connections and provide critical emotional support.
Sometimes, caregivers who feel isolated in their specific caregivers situations have to create their own community. Dawn Shedrick did just that, and her caregiving journey is captured in this NPR article.
Real Simple has a good list of ways people can support the family caregivers in their lives. One of the tips is keep showing up. Just like caregivers keep showing up for their loved ones, we can do the same to support caregivers.
As with many other household expenses, the price of in-home care services has skyrocketed over the last few years. With so many people desiring to age in place at home, families are quickly learning the financial challenges of honoring the elder loved one’s wishes.
The Wall Street Journal reported on the increasing cost of home care, in which the national median cost of a home health care aide is $33 per hour. In 2015, the year that my mother died, the cost was $20 per hour. One woman in Nebraska that was interviewed for the article said she spends a staggering $240,000 per year for home care to tend to her husband, who has Alzheimer’s.
While the hourly rate paid to agencies who employ home health care aides has skyrocketed, the pay the aides actually receive remains low. Median pay for home health care aides is $16.12 per hour, according to figures cited in The Wall Street Journal report. The low pay means high turnover and a challenge in recruiting enough aides to meet growing demand.
The article also discusses the potential high cost of retrofitting an existing home to accommodate the medical needs of a loved one. For example, adding an accessible bathroom on the first floor of a multi-story home for a loved one who can no longer navigate stairs. It would be wise to assess the home your elder loved one resides in and think about the changes that may be necessary as they age, before a healthcare crisis occurs.
Of course, residential facility care comes with a hefty price tag as well. According to a 2023 Genworth study, the monthly median cost for a nursing home facility in the US is $8669 for a semi-private room and $9733 for a private room.
What can families do to address the growing costs of elder care? Long term care insurance may help cover some costs, but read the policy carefully to ensure it covers in-home care service. Those who own homes may explore taking a home equity line of credit or a reverse mortgage. Family members may delay retirement in order to preserve access to good health insurance benefits. As The Wall Street Journal article states, families should not count on an inheritance because that money may be needed to pay for long term care.
Family members who can’t afford to pay for long term care may have to sacrifice their careers in order to do it themselves. I experienced a disruption in my career when I had to quit my job to take care of my mother for half a year as she recovered from major surgery. I don’t regret the decision but I’m still feeling the impact in my retirement funding, which is well behind where I should be at 50 years old.
Does all of this sound depressing? Honestly, I’m glad The Wall Street Journal wrote such a sober, honest article on the topic. The astronomical cost of care in the US needs to be recognized by the general population so that we can increase advocacy efforts to address this untenable situation.
A recent article in The Washington Post discussed a growing and concerning trend: women who live alone and have dementia. Women tend to live longer than men and have a greater chance of developing dementia, so this trend is not surprising, but raising awareness may help communities better serve this aging in place population who have specialized needs.
As someone who is kinless and divorced, with dementia on both sides of my family tree, I think about this scenario often. For now, I’m focused on maintaining good overall health while I consider for my future living arrangements a planned community that intentionally accounts for the needs of their elder population. Things like providing rides to doctor’s appointments or for grocery shopping and offering lawncare and home repair services can help support an elder in the earlier stages of dementia who is living on their own. Making professional services such as financial and legal advisors is also beneficial. One of the most important tasks is one of the most simple: checking in on neighbors with dementia who are on their own to reduce isolation and as a way to ensure someone who needs a higher level of care receives it.
For long-distance caregivers, one challenge is encouraging your elder loved ones to take advantage of resources in their community. After my father died, my mother was very lonely, yet she shunned the social groups at the community senior center. I felt helpless in trying to aid in this situation. My mother didn’t have dementia, which can create an additional layer of resistance.
Here are resources for those with dementia who live alone:
When younger, I was a sporadic voter and I still maintain skepticism when it comes to viable government solutions to the major issues impacting our country. As this article from The 19th points out, I’m not the only caregiver who has felt abandoned by lawmakers.
Recently, both the Democrat and Republican presidential candidates offered their plans on how to better support caregivers. As we know from past elections, candidates offer many plans that sound good, but once in office, those plans are often derailed by Congress and/or the courts. Funding for programs supporting caregivers, from childcare to eldercare, always faces an uphill battle.
If the toxic political atmosphere has you feeling down, one empowering action you can take is by helping older folks and disabled people exercise their right to vote.
Without quality, affordable care, millions of caregivers and care recipients in the U.S. may not be able to vote.
Before Election Day, make a plan to help support caregivers, older adults, and disabled voters in your life and yourself – so we can all vote. #WeCareWeVotepic.twitter.com/YSAAQOTepu
— Caring Across Generations #CareCantWait (@CaringAcrossGen) October 10, 2024
I’ll also be voting in honor of my former colleague, who died last month. She so wanted to live until the election, and spent the last month of her life working on a plan to be able to vote. It’s an important reminder to not take the right to vote for granted.
An article published by Nature recently caught my eye. Instead of medication, a non-invasive treatment called “gamma frequency stimulation” has shown some promise in curbing further cognitive decline in those in the early stages of Alzheimer’s disease, according to early clinical trial study results.
The method may sound dubious at first but the science behind it is interesting. Researchers have discovered that in addition to amyloid and tau protein accumulation, gamma frequency oscillations in the brain occur at a reduced rate in those with Alzheimer’s. Could gamma stimulation boost frequency, reduce amyloid and tau amounts and preserve or improve cognitive functioning?
Mouse models were promising and so are the initial findings of a randomized controlled trial, which found that the “daily use of 40Hz light and sound devices in patients with probable mild AD revealed preserved brain volume, improved memory, and stabilized sleep circadian rhythms.” A longer 30-month extension of this trial found that “patients showed surprising cognitive stability” even during the COVID-19 pandemic. Other trials both at the academic and industry level have reported similar results.
What does the patient have to do to receive such treatment? One product requires a person to wear a special headset and glasses for an hour each day which produces rhythmic clicking and flashing lights that repeat 40 times a second. Another product comes in the form of a specialized light box. Researchers are attempting to make the light flicker and clicking sounds required for the gamma stimulation treatment more tolerable to users by incorporating music into some devices.
Gamma stimulation is not without health risks, especially for those prone to seizures. More research is needed and those interested should be wary of vendors selling expensive machines to consumers that have not been approved for treatment. I’ll be following developments in this trial as I’m all for effective at-home treatments that don’t require pricey medication that can come with a host of serious side effects.
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