Can Seniors Really “Age in Place” with Dementia?
To those who know me, you may know this topic is very near and dear to my heart. This is a hard topic to write about. It’s personal. It’s real. It’s an excruciating reminder that life is way too short but is an important one to share if others are struggling too and not sure where to turn for help. My mom, Lillie Lee, started her memory loss and care journey about 10 years ago. Even as a young girl, I remember hearing conversations about aging and long-term care services in my house. What do we do “if”? What are the next steps “if”? Where should “they” go? These were questions talked about when speaking about aging family members. And here I am now, at the same age as my parents were back then, asking the same questions but this time with my dad about my mom. I can only recall one relative, a great aunt suffering from Alzheimer’s – the most common form of dementia, living in a memory care facility so my experience was limited in understanding what long-term care options were available, especially with dementia. My mom has always maintained her preference is to stay at home for long-term care and not live out her golden years in any type of senior facility. But why?
According to www.aginginplace.com, about 5.2 million people in the U.S. live with dementia. More than 10% of Americans over 65-and 50% of those over 85-have some form of dementia. It may surprise people to know that dementia is not a normal part of aging. It’s a condition caused by a variety of brain illnesses that affect memory, thinking, behavior, and the ability to perform everyday activities. Memory does decline in older adults, but normal memory problems should not affect everyday life. For example, misplacing a pen is very different from forgetting what a pen is used for. In 2012 at the age of 61, we started noticing some memory issues beyond normal aging. She was increasingly concerned about driving too far out of fear she may forget where the car was parked; among other concerns, we had related to discovering a family history of dementia. Her doctor ordered a battery of neurological exams and shortly thereafter, she was diagnosed with an MCI (mild cognitive impairment). MCI is the stage between the cognitive decline of normal aging and the more serious decline of dementia. We were told she could stay the same, get worse, or possibly get better over time. Until 6 years ago, she was still independent. Getting her nails done every week, shopping, writing notes, staying home when my dad traveled and using the computer. Slowly even her normal, familiar daily activities diminished to where she now depends on my dad 24-hours a day. When my dad retired shortly after her diagnosis, he also began to see, firsthand, her cognitive functions decline. From unplugging devices, shutting the curtains compulsively, misplacing cups around the house, even becoming paranoid and delusional. As of today, she cannot sign her name, cannot answer the phone, and forgets who my dad is after 4 pm – among other items. She has zero short-term memory and often gets stuck in loops with both speech, thinking and behaviors. Her condition has progressed so quickly that my dad’s role has shifted from husband to full-time, at-home caretaker. Thus, began his journey with caring for a person who is aging in place and evaluating long-term care services.
As I mentioned above, my mom’s wishes have always been to stay at home, also known as “aging in place”. However, I knew that this would only continue when her needs did not outweigh the ability of my dad to care for her. This was always the plan until dementia came into our lives. At many points in her life, my mom too was a caregiver. My parents cared for my maternal grandmother in our home toward the end of her life, and she too was fiercely adamant about being put in a “home”. My parents, and their parents, come from a generation where “homes” – also known as nursing homes – were cold, institutional buildings where the elderly were sent to live out their golden years. Many Baby Boomers, and those still living of the Silent Generation, correlated these spaces with settings like mental institutions as they were in the 1950s; not for what they are in the present day. However, this idea of a nursing home – now known as a skilled nursing facility – has since evolved into spaces that are designed to feel more like home with furniture and finishes that are safe for its residents.
Interior design is critical for patients in skilled nursing, assisted living, and even senior living communities – especially those living with dementia or other memory-related diseases; a persons’ environment is important to how they live and interact socially and physically (and even spiritually). Just like at home, having familiar objects around them from significant life events, children, and family can be helpful to improve living with their conditions. Design tricks can also improve safety for aging individuals or people losing muscle awareness or strength due to memory-related diseases. As people age, they see color differently, cannot see depth as accurately, and don’t have the same visual accuracy as when they were younger. Contrasts need to be established. Because of that, walls need to be contrasted from the floors, and seats on the chairs contrast with the floors. This way, aging adults do not run into the walls and can accurately sit on the chair and not fall causing injury. Other basic needs for those who are aging include removing trip hazards, such as rugs and flooring transitions, and installing grab bars to allow for more independence around the house. All of the above design elements and tricks are used in long-term care facilities but also should also be utilized in the home setting to avoid unnecessary injuries to aging adults who still live independently. We use these same methods when designing our healthcare spaces that are focused on the well-being of the patients.
It’s important to note how nursing homes and other long-term care services started in this country to perhaps better understand where my mom’s (and grandma’s) fear stems. According to The Almshouse Association, before the 20th century, all kinds of care – including eldercare – were performed at home. The wealthy hired servants and those less well-off, women were expected to take on the bulk of the caregiving, uncompensated. And for those who were poor and without families capable of caring for them, there were almshouses. By the early 10th century, more specialized institutions opened to address the disparate need of people who had relied on almshouses. This included schools for the blind and deaf, orphanages, mental asylums, and homes for wounded veterans. As a result, the percentage of people in almshouses who were elderly soared. In 1880 about a third of all almshouse residents were elderly; by 1923 that share of residents had doubled. However, The Great Depression overwhelmed and ultimately destroyed the almshouse system. Suddenly, millions of Americans were in poverty and this gentled public opinion toward the poor. The public turned against almshouses and embraced cash benefit programs like the Social Security Act of 1935 and the advent of the welfare system. The act was meant to usher in an era in which senior citizens could pay to support themselves in their own homes. In 1946, Congress passed an act that gave grants for nursing homes to be built in conjunction with hospitals and gave the government control over building and regulating them. It was decided that facilities housing older people should focus on providing medical care, which moved nursing homes from the welfare system to the healthcare system.
Nursing homes have too changed since their inception. Now known as skilled nursing facilities, they provide 24/7 skilled nursing care for residents who require specialized medical care or daily therapy services in a skilled-care setting. A stay in this type of setting is likened to a long-term hospital stay. However, residents may stay temporarily where their care is focused on providing rehabilitation services to prepare them to return to their independent lifestyle. Skilled nursing communities may also be long-term or permanent homes for residents who require assistance with most or all activities of daily living (eating, bathing, and mobility) including round-the-clock complex medical care and supervision. Most patients with advanced dementia and other cognitive diseases require this type of care. Depending on the availability of the facility and level of care needed, residents may choose between a semi-private room or a private room and eat their meals in a common dining area. This level of care does not allow for locked doors or kitchens within individual rooms for residents to cook out of the utmost concern for the residents. Skilled nursing communities include a full calendar of daily scheduled activities to ensure their residents are socializing and keeping emotional health top of mind. Because these communities provide the medically necessary care that is supervised by a licensed physician, the cost of care is covered by Medicare and Medicaid and most long-term care insurance policies.
By the 1970s, people were looking for more than just a bed and storage locker for their family members, often found in rudimentary nursing homes of the time, and the assisted living industry was born. Assisted living communities emerged as a choice for those needing some level of support without the medicalization of a nursing home. Assisted living communities focus on senior care from health to personal care and may be used for short-term stays in between the hospital and home. These facilities offer private rooms with doors that lock, 24-hr staffing, and community areas for social interaction. They offer meals to their residents but also include kitchens to cook independently, which differs from skilled nursing facilities. Residents have the freedom to set their schedule and pursue whatever interests and hobbies they desire, Transportation is also provided to enable residents to stay active in their community and to attend church service, beauty appointments, and doctor appointments. Assisted living facilities also allow residents to bring their furniture and belongings into their space, like a truly home-like environment. These facilities are typically apartment-style residences that may be private or semi-private. They are built and designed as most apartment complexes are, architecturally, and consist of the creature comforts of home. Memory care units, often a dedicated wing within the facility, are available in select facilities. Assisted living communities are mostly private pay with select locations accepting Medicare and Medicaid and most long-term care insurance policies.
The establishment of over 55 or 55+ communities, now known as senior or independent living, came about in 1968. At the time, these communities were considered ageist, discriminatory, and illegal for those outside of 55+ – although they did exist. In 1995, the amendment to title VIII of the 1968 Fair Housing Act (FHA) gave an exception to these types of communities. Adults over the age of 55 were able to buy and live in exclusive communities geared toward the needs of active adult homebuyers. Most senior living communities include shared amenities, ADA-compliant facilities, and low maintenance and often single-level homes. Senior living (or independent living) is marketed to seniors who are completely capable of living an active lifestyle on their own without on-site medical care but who are looking for assistance with menial everyday tasks and additional socialization and community with like-minded seniors. These are communities of townhomes, duplexes, or free-standing homes where residents live and socialize. These communities are also built and designed like many housing communities across the nation but are exclusive to just this age group. As with skilled nursing and assisted living, non-medical staff work round the clock for the basic needs of their residents, and activities are the main staple for residents in these communities. This is where my vision of seniors playing penuckle and shuffleboard in Florida comes to mind. All of the above long-term care facilities have evolved and will continue to evolve based on the needs of our aging population. Families need to be informed of ALL their options for their family when planning long-term care. The choice can be overwhelming at first, but just as a new homebuyer does when they start their home buying journey, deciding on what is most important to the (resident) person and of course proximity to family, will assist in narrowing down the available choices.
Another option for aging seniors is to choose to age in place. The CDC defines this as the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level. However, many seniors at a certain age require some level of care at home and/or long-term services. They can vary from home health, occupational health, or hospice services that come into the home on a scheduled basis. The decision to age in place requires advanced planning, especially when planning updates of the home, and making a contingency plan to pivot to in case there is a life-changing event that occurs. We began modifying my parents’, single-story home many years ago with an updated ADA-compliant full bathroom. This was outfitted with a step-in shower and handrails. They also removed a step from the front walk into the home to eliminate a significant trip hazard when entering. Soon, they are beginning a flooring project to remove all high-pile carpeting, remove linoleum from the kitchen/bath/entries, and remove all-metal transitions from their home. The decision to use an LVT or EVT click-based product for the entire floorplan of the house will allow for fewer fall hazards and ease in care This project should have been done years ago but due to the pandemic, a major delay in both manpower for construction and manufacturer delays presented unforeseen obstacles.
Publications say to begin age in place planning in your 20-30’s when a person starts saving for their retirement fund. Re-evaluating when in your 50-60’s is best or if there are changes to health for the individual and/or needs within the home. However, the best time to think about long-term care is before you need it. Medical conditions like dementia or other cognitive diseases are ever-evolving and usually only allow for a short window to pivot, as in the case of my mom, so having a plan beforehand is paramount. Most seniors who age in place at home live alone without family nearby, but some do live with a spouse or relative. Most, including the spouse, have some issues with everyday tasks. Consequently, the quality of life for many has suffered due to not seeing the warning signs early enough and pivoting to another care plan.
Like with my parent’s situation, my dad has been in the caretaker role since 2013 and has managed her (their) health flawlessly. He manages their daily medications, their medical history, and never misses a doctor appointment or routine lab. However, my dad is experiencing increasing concerns about caring for a person with dementia and he, like most caretakers, believes he can do everything by himself forever. I mean he is my superman, but he’s not mastered the art of asking for help and knowing his breaking point. With a recent change to his health, we have come to terms that he does need to rethink the decision for my mom to continue to age in place. The fact is that diseases related to cognitive memory loss, professional health care in a long-term care facility is usually the only reasonable choice for most families. We are balancing what my dad can still do vs. what he needs help with moving forward and still allowing time for his care too.
The concern is that we are behind the Eightball. The pandemic has been a major roadblock in our planning for the next steps with my mom. His support system was paralyzed during the pandemic, and everything became very overwhelming. With us being physically separated for a year due to Covid, it was hard (understatement of the century) to keep up. I could not help with weekly tasks with my mom (like weekly baths and cleaning the house), I was not able to attend doctor visits due to the guest limit and my dad had to rely heavily on local family members to watch my mom so he could leave to go to the store or his doctor visits. There was no outlet of help outside of our family due to the measures needed to control the virus in 2020-2021. It has taken a toll on everyone, especially my dad. When I say it takes a village to care for one person, that is no joke.
Many governmental agencies were closed during this time which severely delayed reviewing and approving documentation needed to acquire in-home support for my parents. Despite our efforts, we struggled to find the right person to talk to within these agencies and many times were misdirected. My dad is maneuvering through mountains of paperwork, applications, and interviews to find the available financial help he needs for my mom’s future care. The light at the end of the tunnel is that he found a reputable elder law attorney who was able to walk us through the next steps and successfully file applications on our behalf. We are in the process of completing that paperwork now and have the direction needed to take the next steps. This very simple step of finding an elder law attorney, who is the gatekeeper of knowledge, years ago would have us closer to alternative care options now vs. stressed about when the other shoe may drop. This could be another reason families didn’t choose a nursing home setting in years past because it takes a superhuman amount of perseverance and a lifetime to navigate the paperwork?!
I would be remiss if I didn’t address the caregivers. Being a caregiver (of an aging adult) is an unpaid, stressful job. Either self-imposed, dictated by location, or other circumstances, it’s exhausting, it’s relentless, and it’s a daily reminder that getting older sucks. Caregivers are typically not healthcare professionals, learning as they go, and are the average Jane or Joe, in my dad’s case…Phil. They provide round-the-clock emotional and physical support whilst, for the most part, not reciprocated. Their stress is greater than most full-time employees and parents combined, and usually, they are also full/part-time employees and parents too. They tend to experience higher health risks associated with being caregivers, like anxiety and depression, and usually heal slower from illness due to stress. So, stop and take a moment to think about those who are caregiving. Rally around those who rally around their loved ones. Ask them how they are doing, how you can help (realistically), bring them a well-deserved treat, or just listen when needed. Assist caregivers to find the time to take for themselves and seeking out local support groups to find comradery with others battling the same battles.
“Kindness can transform someone’s darkest moment in a blaze of light.” – Amy Leigh Mercree
In conclusion, there is no right or wrong answer for families planning the future of their elders. Aging in place or seeking out long-term care facilities are both valid options for all aging adults. However, those with family members suffering from cognitive-related diseases or conditions often find that professional care in a long-term facility is the best route. And some seniors may cycle through various options throughout their golden years. Maybe it’s a remodeling project at home to provide more safety to the individual(s). Perhaps it’s touring various local, long-term care facilities and reviewing the design of their facilities. Maybe it’s scheduling weekly professional or medical in-home assistance to maintain an independent lifestyle at home. Depending on budget, needs, and availability, there is something out there for every family. Planning and having a contingency plan is critical! It first begins with the wishes of the individual, but also what is important to their long-term care plan and care team. Keeping their next home or current home as familiar and safe as possible through intentional design will ensure your loved ones remain healthy and happy in their golden years.
If you or someone you know is a caregiver of a person with a cognitive-related disease or condition and needs help finding support materials, a caregiver support group, or other support needs, call the 24/7 Helpline at 800-272-3900 or click https://www.alz.org/indiana/helping_you for additional online support tools.