Paving the Way for Dementia Journeys
By Julie Estlick
When Mitchell* kept forgetting trash day and couldn’t remember recent conversations, his wife Mary* didn’t think too much about it. A few months later, the retired minister was officiating his grandson’s wedding and suddenly went off-script, leaving out a beloved aunt who was standing on stage waiting to do a reading.
“In the past, Mitchell never would have made changes to a ceremony on his own like that,” Mary says, shaking her head. “When we asked him afterward, he gave an excuse—that’s when I knew something was wrong.”
The couple went to Cheyenne VA Medical Center where Mitchell was tested and told he had cognitive memory loss. They left that day with some medication and the name of a dementia website. Fortunately, Mary knew about Dementia-Friendly Communities of Northern Colorado®, one of several area organizations offering resources, support, and activities for families on the dementia journey. She joined a caregiver’s support group and takes advantage of opportunities for Mitchell to socialize.
As we live longer, healthier lives, the risk of being diagnosed with cognitive decline later in life increases. Nearly 6 million people in the United States age 65 and older are living with some form of dementia, and that number is expected to keep climbing, according to the Centers for Disease Control and Prevention. Larimer County already has one of the fastest aging populations in Colorado, and it’s estimated that by 2040 some 80,000 adults over 64 will reside in the county. Preparing ourselves, our public services, and businesses for the surge of older adults living with dementia-related diseases in the community is becoming more urgent, advocates say.
Dementia is not a specific disease, but a general term for a decline in cognitive ability severe enough to interfere with daily life. It includes a group of symptoms that together affect the normal thinking, short-term memory, communication, and the perceptual abilities of an individual, though signs vary from person to person. Alzheimer’s disease is the most common type of dementia but there are several others, and people can have more than one type.
While age is the greatest risk factor for dementia-related diseases, dementia is NOT a normal part of aging. Typical age-related memory loss differs from the early signs of dementia. For example, an older adult forgetting where they put their keys or the mailman’s name, but recalling later that day, is not a symptom of dementia. However, a spouse who can no longer keep track of bills and gets confused when leaving the neighborhood is showing dementia-like behavior you should discuss with a medical provider.
Cyndy Luzinski, founder and executive director of Dementia-Friendly Communities of Northern Colorado, uses the SPECAL® photograph album analogy to describe the thought process of someone living with dementia. Think of all of your memories as if they are pictures in one big memory book. When you have dementia, it’s as if some of the factual details of the photographs are missing. “A person with cognitive issues must match the feelings of what is going on currently with old photographs, picking through the ones they can still access, to help bring some kind of context (facts) to what they are feeling given what is happening around them—even if it doesn’t make sense to others in the
moment,” Luzinski explains.
SPECAL stands for Specialized Early Care for Alzheimer’s and is a method of communicating with people with dementia taught by Contented Dementia in the UK. Luzinski is currently the only credentialed SPECAL coach in North America.
She teaches employees at local businesses and public service agencies about techniques for interacting with people living with dementia, such as approaching from the front, using simple statements, avoiding contradiction or rushing, giving just a few options, and seating them in quieter areas.
Luzinski also organized the region’s first intergenerational Memory Cafés, where people living with dementia and their care partners can socialize with others on the journey and members of the larger community.
Is it dementia?
While there is not one conclusive test for a dementia diagnosis, a neuropsychological assessment is an important tool doctors use in making a diagnosis, explains Deana Davalos, a neuropsychologist and director of the Aging Clinic of the Rockies.
The clinic is a partnership between the Columbine Health Systems Center for Healthy Aging and Colorado State University. Graduate students from CSU train under Davalos at the clinic, which is open to the public and offers the assessments on a sliding-scale basis. Counseling sessions for caregivers and peer counseling for older adults who may be struggling with life changes are also available on a donation basis.
Since cognitive decline can start slow and gradually get worse, it’s important to recognize changes in yourself or a loved one and take action, Davalos advises. “The earlier you can come in for an assessment, the better. Even people just over age 50 or 60, if they are noticing anything different, don’t put it off. We can get a good baseline and a more accurate diagnosis later on.”
So you have a diagnosis, what next? Understandably, family members want to keep their loved one living at home for as long as possible, but extra care may be needed. A spouse or adult child often takes on the role of caregiver which can become hard to balance with other family and work obligations.
A helping hand
When caregivers decide they need some assistance, they may start with a nonmedical care provider who can spend time at home with their loved one. “A companion offers another social relationship for the person living with dementia and gives the caregiver precious time to themselves to get errands done, rest, or do self-care,” says Lynette McGowan, family caregiver support program coordinator for the Larimer County Office on Aging.
McGowan meets one-on-one with caregivers and tries to lift their strain by getting families connected with the many resources and support groups in the community.
Adult day centers like Elderhaus in Fort Collins and Stepping Stones in Loveland offer a chance for people living with dementia to be engaged, safe, and out socializing with others while the caregiver can continue working outside the home or enjoy a respite. It’s also useful for visiting relatives who need a safe place to go when the rest of the family is at school or work, notes Tim McLemore, executive director of Elderhaus (not a house or an overnight facility as the name might imply).
As dementia progresses, supplementing with in-home therapy and skilled nursing care is another option for families.
Safety is the key, experts say. When a person living with dementia becomes a threat to themselves or others, or if a caregiver is not able to rest because of their constant fear and anxiety, it’s time to find more secure housing.
The Office on Aging keeps a list of nursing homes, assisted living, and memory care communities, and families can meet with a case manager for ‘options counseling’ to help navigate the long-term care service and support system.
Making such decisions for Mitchell may be years away, but Mary knows where to find help when the time comes—and that is a relief.
*Not their real names
Larimer County Office on Aging Family Caregiver Support Program
Alzheimer’s Association Colorado Chapter
Aging Clinic of the Rockies
Stepping Stones Adult Day Program
10 Warning Signs of Alzheimer's
Source: Alzheimer’s Association