Fans of Bruce Willis were surprised to learn last month that the 67-year-old actor was diagnosed with dementia. We tend to associate this condition with much older individuals and with Alzheimer’s, its most common cause, but dementia can strike adults earlier and with other conditions, including Parkinson’s, Huntington’s disease, traumatic brain injury and the Frontotemporal Dementia (FTD) impacting Willis.
According to a publication from the CDC, about 5.8 million people in the United States have Alzheimer’s disease and related dementias, a number that is predicted to more than double to 14 million in the next four decades. This prediction can be terrifying for older adults living happily and independently, and for their families.
“Although age is typically the greatest risk factor for most types of dementia, there are some that can strike at much earlier ages,” according to Jennifer Reeder, director of education and social services for the Alzheimer’s Foundation of America, in an emailed response to an information request. FTD can cause symptoms as early as one’s 40s to 50s, even in one’s 30s, she noted. “There is also early onset Alzheimer’s disease, which causes symptoms earlier than age 65, sometimes much younger,” she added. Only four to six percent of cases is early onset, she clarified, and can be caused by a rare genetic mutation or even chronic alcohol abuse.
Early Home Intervention
While you don’t need to move someone out of their home upon a diagnosis, it’s helpful to start thinking long term about what the person with dementia may need to remain living on their own for as long as possible. “It is always helpful to reduce any type of clutter, which can cause disorientation and confusion even early in the disease, as well as causing greater risk of falls,” Reeder advised.
Alzheimer’s can reduce someone’s ability to see color contrasts and judge distances, she pointed out. “Having a matte finish on the floor is very helpful, since glare and shine can cause disorientation. It is also great to use labels with pictures, see through cabinets, and safety features in the kitchen so the individual can continue to do things independently,” she advised.
Later Home Support
“We need to be sure the person is still able to move around safely; we always want to help create movement vs. detaining the individual,” Reeder commented. If someone has always been active, they will likely want to continue being active, she observed. “It is helpful to have music programmed for challenging times of the day and during challenging tasks like bathing and eating,” she suggested.
She also recommended “making sure that the home is full of soothing artwork, colors like blues and greens, and reminiscent decorations.” Walking a distressed person to the reminiscent decorations and showing them artworks or other mementos connected to the person’s culture or past can help ground them and ease their distress, she explained.
Home Design Ideas
Rosemary Bakker estimates that approximately half of her Age-Friendly Design firm clients are impacted by dementia. The New York-based adaptive designer, gerontologist and author of Elder Design and the AARP Guide to Revitalizing Your Home, hears from distraught relatives whose loved ones are recently widowed, or when “everything starts to fall apart and ‘close calls’ are becoming more frequent and dangerous,” she shared in an email. Those close calls can be food left cooking unattended, wandering outside and getting lost, or forgetting to turn off the shower water. “Sometimes a serious fall and hospitalization occurs and the family does not want the person going back to an unsafe environment,” she recalled. When possible, home modifications for safety and independent living can be completed while the person is temporarily recuperating in a rehab facility, she suggested.
Bakker starts by implementing accessibility features that are helpful for all, she noted, but especially for people with dementia who will have mobility challenges at some point. Making bedrooms and bathrooms fall-resistant and caregiver-friendly help reduce or prevent accidents. For kitchens, she prefers smart electric burners, rather than gas or even the generally safe induction, which may not be usable for someone who has no memory of cooking on that technology.
Bakker designed a model apartment for persons with dementia that can be viewed at the Alzheimer’s Foundation of America site in New York and online. “It’s important that the person feel safe and comforted in their home environment.” Surrounding him or her with reminders of pleasant memories from the past can enhance the person’s well-being, she observed. “Wall to wall carpeting can be soothing in the bedroom,” she also noted, but she recommends low pile that is easily traversed with a walker or wheelchair.
“For those who are care partnering from afar, there are technology devices that can also be very helpful – doorbells with camera so you can see who is at your loved one’s door, and when they may be leaving the home,” Reeder said. “Also, smart smoke alarms and carbon monoxide detectors that will alert anyone with the app on their phone when the batteries need to be changed. There are also smart refrigerators with cameras inside so you can check to make sure your loved one is eating well,” she added.
“Caregivers can also receive alerts if a fridge door has been left opened,” Bakker noted, commenting further about the potential of smart refrigerators to support independent living for people with dementia: “A large digital panel on the front acts as a ‘Family Hub’ with a calendar, weather, reminder notes and family photos, all remotely controlled by caregivers. This is a great example of providing holistic support to help the persons live independently for as long as possible, including assessing food intake, offering appointment reminders and socialization.”
Smart Home Technology
Ryan Herd, CEO of Caregiver Smart Solutions, a technology integration firm based in Northern New Jersey, works with family members to set up systems in their loved ones’ homes, which can be across town or even across country. This means integrating technologies that can create a safer environment for the person with dementia and peace of mind for the caregiver. About 30% of his clients are caregivers to loved ones with dementia, half of them living independently, he wrote in an email interview.
“We specialize in providing assistance for concerns related to wandering and self-safety,” Herd noted. His core kit provides real time data to caregivers about their loved one’s well-being, allowing them to live on their own as long as possible.
It does this with an app, a hub, and sensors placed in the care recipient’s home that can detect movement, door or drawer opening, (to determine whether someone is eating, getting out of bed, falling, leaving their bedroom, living area, the home, etc.). This is more respectful of the person’s privacy and dignity than cameras, which they might block from view if they feel watched.
The system is also designed to enable predictive analysis to identify potential problems earlier, Herd reported. “Our goal is to minimize [medical facility] readmittance and help our patients achieve the best possible health outcomes,” he added.
Reeder has an additional technology-based suggestion for independent living: “Circadian lighting is a great way to help, especially if the person experiences sundowning,” (late afternoon confusion), the Alzheimer’s educator shared. Because it mimics natural sunlight’s cycle through the day, this lighting technology has been found to help people with dementia whose biological clock is affected by the disease, she added. Circadian lighting can be achieved with smart bulbs or through more complex smart home systems.
Two studies, one from 2020 conducted by Brown University showed circadian lighting reduced sleep disturbances in nursing home residents, and another, led by Harvard and published in 2022 found that circadian lighting reduced falls by 43% in care home residents. Both of these potential outcomes can help the person with dementia avoid or reduce the risk of further harms that can worsen their condition or even shorten their lives.
“Research shows that aggression, agitation, wandering can all lead to the individual with dementia moving to a long term care community much sooner than medically necessary due to the family not knowing how to manage such behaviors,” Reeder observed. “If we can modify the home environment to support movement while reducing risks of wandering, or change certain aspects of the home to help create greater safety, comfort and soothe a person when they are in distress, these modifications can all help a person remain at home for much longer.”
“A dementia-friendly living space can help a loved one still have a fulfilling life to the maximum extent possible while making caregiving less difficult and more fulfilling,” Bakker added. All of these ideas can help an aging America and those who love us.
Contributors Bakker, Herd and Reeder will be sharing more wellness design for dementia insights in an hour-long Clubhouse conversation tomorrow afternoon (March 15, 2023) at 4 pm Eastern/1 pm Pacific. You can save the date and join this WELLNESS WEDNESDAYS discussion here. If you’re unable to attend, you can catch the recording via Clubhouse Replays here or the Gold Notes design blog here next Wednesday.