Anyone who has experienced dementia in some capacity knows that it can have a profound impact on the person diagnosed, as well as those around them. For the individual with dementia, the decline in cognitive functioning can lead to difficulty with daily tasks, loss of independence, and changes in personality and behavior. The progression of decline is often hard to predict, making it difficult to know what steps to take to create a supportive and safe environment.
Early diagnosis is often the key to creating an effective care plan for a person with dementia. And helping a family develop that plan early can prevent wrenching decisions later, like moving the loved one out of a care facility that cannot meet their needs.
What Dementia Is — and Is Not
Dementia is not a specific disease, but rather an umbrella term for cognitive decline that interferes with daily life. Alzheimer’s disease is the most common form of dementia, accounting for 60% to 80% of cases. Other types of dementia include vascular dementia, Lewy body dementia, and frontotemporal disorders. In some cases, a person may have more than one type, a condition known as mixed dementia. Each form of dementia has its own defining characteristics and symptoms, but all involve progressive cognitive decline.
Dementia-related symptoms are different in each person and can range from mild to severe. Depending on the type of dementia, the progression can be gradual or accelerated. Vascular dementia tends to be more rapid, with an average life expectancy of about five years. People with Alzheimer’s tend to experience a slower decline, with a life expectancy of three to 11 years.
In an ideal world, we would all move into a dementia-supportive environment as soon as diagnosed. In many cases, however, formal diagnosis is delayed. The onset of symptoms can be subtle and appear gradually, causing people to mistake it as a normal part of aging. Few people talk to their doctors right away after experiencing symptoms.
In a recent survey by the nonprofit Alzheimer’s Project, 75% of respondents did not talk to their doctors for over a year after symptoms started; more than 30% of respondents delayed this talk for more than three years. An early diagnosis is important not only for possible treatment options, but because it allows that person to make decisions for their future care while they are still able.
Important Conversations
For advisors and families assisting someone diagnosed with dementia, it is important to allow the person to have as much control as possible in the decision-making process. Research shows that a sense of autonomy and self-determination is directly related to a person’s quality of life. A diagnosis of dementia does not mean a person is automatically incapacitated. To the contrary, research suggests that people with mild to moderate cognitive impairment can make their wishes known about preferences, choices, and their own involvement in decisions about daily living.
Downsizing, or simplifying the environment in which a person with dementia lives may be helpful in fostering independence and even slowing the rate of decline. During the early stages of the disease, some people choose to move closer to relatives so that they have support nearby as their needs increase. They may even move in with their loved ones.
The Power of Socialization
The aunt of my client Tom decided to move to an assisted living facility soon after her recent Alzheimer’s diagnosis. It was a big change for her as she was used to living in her own home. Tom says it took time for her to settle into her new apartment and become part of the community of residents. Now, she participates in daily activities and enjoys meals in the dining room. She particularly loves the art classes and takes great pride in her creations. My client credits the staff at the facility for helping draw his aunt out of her apartment and encouraging her to engage in activities.
When living arrangements are being considered, the environment should not only compensate for a person’s diminishing capabilities, it should also contribute to their ability to engage and connect with others. Research shows that social interaction is critical in slowing the progression of some types of dementia. Non-pharmaceutical interventions, such as music and art therapy, have been shown to improve mood and behavior.
Another client, Silvia, has dementia and lives in her own home. Despite having full-time jobs, Silvia’s family members have been overseeing her day-to-day care. Silvia used to go to an adult day center for activities a few times a week, but the facility no longer provides transportation. Silvia’s son has seen a dramatic decline in just a few weeks since she stopped going to the center. They are now considering a move into an assisted living facility.
Better for Both Spouses
In many cases, family members try to provide day-to-day care for loved ones at home for much of the duration of the disease. At some point, however, the complex needs of those living with dementia exceed what caregivers can handle. The person with dementia, as well as the caregiver, are both at risk of becoming isolated. Sadly, moving a loved one into a long-term care facility is often seen as a sign of failure.
This was the experience of my client Bill. His wife, Lois, has dementia and he has cared for her for several years in their home. As Lois’ dementia worsened, she began wandering outside, as well as waking him up several times during the night. The supervision Lois required was so stressful that Bill’s own health began to suffer. Eventually, Bill decided it was time to move Lois into a memory care facility.
The idea of the move was stressful for Bill and his daughters. Because Lois was not able to fully comprehend the situation, they did not discuss the move with her in advance. The day of the move, Bill’s daughters drove Lois to the facility. Bill was advised by the facility not visit for the first several days to allow Lois to develop relationships with the staff and residents at her new home.
When I spoke with Bill recently, he reported that Lois has adjusted better than anticipated. He now goes to visit her daily and has dinner with her each night. She no longer asks to go home with him. She participates in some of the activities and has even formed some friendships. While he admits that he gets sad, he realizes it is better for both of them.
Respite Recommended
Another client, Susan, recently helped her mom move into an assisted living facility. Susan and her mom had lived together until the care became too difficult for Susan. The community Susan selected had a respite program, and her mom had stayed there when Susan went on vacation and to a family wedding. Susan believes that the respite stays helped her mom settle in more quickly after the move. She was familiar with the facility and some of the staff.
When advising clients, I always recommend arranging a temporary respite stay, when possible. Not only does it allow a person to become more familiar with a community prior to a move, it also allows the families and caregivers to observe the type of care a loved one receives before committing time and money to move.
How Much Care?
When considering long-term care, it is also important to make sure that a person is placed in the appropriate level of care. Recently, a client, Jan, moved her husband into a newly built assisted living facility. After a few weeks, he began to wander the halls at night. In addition, he fell several times and had to be taken to the ER. The staff has advised Jan that his care needs are too great and that she will need to move him to another facility. Jan is distraught thinking about moving him again.
In many cases, assisted living is an option in the early stages of dementia. However, the later stages typically require more extensive care and supervision. Traditionally, nursing care and memory care units provide a higher level of care. People with late-stage dementia typically require facilities with secured perimeters and benefit from a higher staff-to-patient ratio.
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Having a thorough assessment conducted prior to a move helps to ensure that a person is moved into the appropriate environment for care and safety. Advisors should note that if funds are expected to be depleted at some point, families need to make sure the facility they choose will except Medicaid.
Dementia Suspected?
Healthcare professionals can provide information on the disease process and what to expect. This is useful in determining the appropriate care environment a person will require and possibly avoid multiple moves. Being proactive and developing a plan sooner rather later helps families avoid making decisions under duress. Whenever possible, the person with dementia should be included in the planning process. This can go a long way in allowing for a smooth transition when the time comes to move.
Molly Prues, a gerontologist, is CEO and founder of VistaLynk, a company that provides education on the issues that impact older age and caregiving clients. VistaLynk’s ground-breaking programs provide the building blocks to reimagine aging and empower caregiving.
