Understanding the disease results in better dementia care and a higher quality of life for residents.
Adult children and spouses of someone showing mental decline often wonder how to know if the behavior is a normal sign of aging or if a loved one is facing something more critical.
Mom forgot to pay the electric bill. Your husband took a wrong turn on the way home from the grocery store. It happens. These seem like fairly harmless mistakes. But determining the level of severity of these incidents can mean offering a better level of care if the person is indeed suffering from dementia.
Dementia, a decline in mental ability that interferes with everyday life activities, is not a specific disease but a set of symptoms relating to impairments in memory, intellectual functioning, and the ability to perform everyday tasks. It is not a normal part of aging. According to the National Institute of Neurological Disorders and Stroke (NINDS), about 5.2 million Americans have Alzheimer’s disease, which causes 60 to 80 percent of dementia. One-third of these individuals with Alzheimer’s are 85 years or older.
SYMPTOMS AND STAGES
People with dementia have trouble with short-term memory and are more likely to struggle with basic activities such as keeping track of money or preparing meals, and they are more likely to get lost, even when in a familiar environment. If these struggles disrupt everyday life, it could be a warning sign. Other indicators include difficulty completing familiar tasks, trouble understanding something relevant to the past or future (i.e., not happening right now), vision problems related to color and spatial orientation, and more. Behavioral and sleep changes often occur with dementia.
In the early stages of dementia, your loved one may experience anxiety, irritability, and depression as daily life becomes difficult. At this stage, eliminating obstacles and creating more comfortable surroundings offer safety and additional peace of mind. Take care to avoid major changes, which could cause greater confusion.
Caring for an individual moving into the middle — and longest — stage of the disease becomes even more challenging as problems with independent living occur. Progression leads to the need for significant support in performing everyday tasks and increased risk of wandering and becoming lost. Wandering can lead to problems if the environment is not designed to allow for this behavior, but is not in and of itself problematic. In fact, wandering can be therapeutic, providing exercise, stimulation, and benefits to mental health. Things like wearing identifying information on a bracelet or modifying the living environment can help families feel less concerned about their loved ones wandering away and becoming lost.
During this stage, you may notice your loved one experiencing anger and even becoming aggressive. As a family member or caregiver, it’s important to not take the behavior personally if that anger is directed at you.
The last stage of Alzheimer’s is the period in the disease trajectory in which individuals lose the abil-ity to respond to their environment and may lose the ability to communicate altogether. Extensive care is needed for day-to-day activities.
Several tests can be administered by doctors if individuals or their family members suspect they may have dementia. These tests, which sometimes include brain scans, cognitive tests, lab tests, and psychiatric tests, are used to identify the type and extent of dementia, as well as whether the cause might be related to a treatable issue.
Currently, no drugs are able to provide long-term changes in disease trajectories, and they cannot reverse existing brain damage. However, they have been shown to temporarily slow progression of the symptoms for some people. Additionally, some drug and non-drug treatments can help with cognitive and behavioral symptoms. Non-drug methods for managing dementia symptoms, particularly during the early and middle stages of Alzheimer’s, include practicing of tasks, use of memory aids, note taking, exercise, and other cognitive stimulation activities.
If you witness any of the indicators of dementia, early detection is key to helping you or your loved one continue to live a full, healthy life. It can allow time to explore all available treatments as well as plan for the future, making decisions about care, living arrangements, and legal matters. And remember: It’s important for family members of the person suffering to seek support during this time, too.
Path to the PresentSM : A RESIDENT-DIRECTED PROGRAM
Although it may not be possible to stop or reverse progressive dementias, it is possible to maximize the ability of those with dementia to live a full life. According to the Alzheimer’s Foundation of America, it is most important to identify ways to help people maintain a sense of independence and autonomy that is safe, comfortable, and encourages engagement in a meaningful, healthy life.
These are the very goals guiding a new program rolling out in Spectrum communities nationally in 2016. With the guidance of Dr. Cameron Camp, a national leader in program design for cognitively impaired adults in the U.S. and Europe, a few select Spectrum communities will serve as incubators for learning how to make the program scalable to all communities in the most effective way possible.
In traditional memory care units, residents typically have their day planned for them, from the time they wake up, to when they eat, bathe, or engage in pre-planned activities. In Spectrum’s new program, “We are using an approach with residents that adapts the environment so that a resident can reach his or her greatest potential — and that means physically, mentally, and spiritually are able to participate in life and guide his or her own care,” said Carole Hull, Spectrum’s Vice President of Resident Care and a key player in the introduction of the new program. “We want to empower residents to make decisions in their lives and help their self-esteem so they can feel that they are an integral part of society.”
The program is Montessori-style, which is characterized by an emphasis on independence and freedom within limits. It is an approach that models human development and is structured around human tendencies such as activity, exploration, order, and orientation. With a high-staffing model of care, the program is based on the life history, interests, and needs of each individual resident. It is designed to foster independence and participation and is centered around the motto “What you do for me, you take away from me.”
Hull described how such an approach can come into practice. “For example, we invite residents to vote on the activities that they are interested in. If they choose to have an ice cream social, based on the current abilities of residents, they might participate by scooping the ice cream, being in charge of the toppings … each can have a job and an important role in the activity.” In addition, Dr. Camp trained staff in techniques that help dementia patients relearn how to do certain tasks, like using utensils, by practicing and modeling the behavior, relying on well-ingrained muscle memory.
We can change the way we view dementia, change how we treat people with memory problems, and in so doing change our culture to maximize the opportunities for people living with these issues. Spectrum is making great strides to give people the tools they need to maximize the quality of their lives.
DESIGNING FOR MEMORY CARE: CREATING A COZY, HOMEY ENVIRONMENT
According to Jan Andresen, an interior designer who is leading the redesign and development of the new Spectrum memory care communities, several specific design features are important in order to maximize the independence of residents. Andresen says that one of the most important design considerations for memory care communities is making sure that the living environment feels like home and is very cozy. However, the design is also critical to maximiz-ing the autonomy of residents by providing cues to help them navigate. In the new communities, hallways will be color-coded so that residents can remember the color of their own hall, and there will be more activity stations to enhance opportunities for residents to remain as engaged as possible in everyday tasks.
By Dawn C. Carr, MGS, Ph.D.
Dawn C. Carr is a Social Science Research Associate at the Stanford Center on Longevity. She received her Ph.D. in social gerontology and master’s in gerontological studies at Miami University. Carr’s expertise lies in the physical, social, psychological, and cognitive health of seniors and the transition into retirement. Carr is widely published in such publications as The Gerontologist, Psychology Today, and Forbes.