In the last dozen years, the number of people diagnosed with dementia has multiplied from an estimated 18 million to a whopping 47 million, worldwide. These numbers are expected to double by 2020; that's just 13 years from now. The Alzheimer's Association reports that a person is diagnosed with dementia in the U.S. every 33 seconds; in a recent media release, the group also stated that Alzheimer's remains the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed.
The dramatic rise in numbers is due, among other reasons, to the following:
1. Medical professionals know more about dementia.
2. People are being diagnosed earlier.
3. Worldwide, our population is aging.
Thanks to advancements in research, medical professionals are able to diagnose people earlier. More people are being diagnosed during their peak earning years. While experts used to dismiss concerned family members' descriptions of loved ones' unpredictable behaviors and forgetfulness, today's doctors are looking deeper. They are withholding previously placating remarks. Instead, specialists are willing to consider younger-onset dementia in people as young as 40 (even younger) who show symptoms.
Despite the lack of a cure and an estimated 100 or more causes (some reversible), one positive development is the ability to better differentiate among the causes of dementia. These include: Alzheimer's, frontotemporal lobe dementia, Lewy bodies and Parkinson's. Recently, there's been an emphasis on earlier diagnosis. Yet, there is a risk of being misdiagnosed. Meanwhile, people remain divided on getting an early diagnosis due to fears of being stigmatized versus the relief of finally knowing.
Focus on Abilities Not Disabilities
During the 20 years I've worked with families and professionals caring for people with dementia, I've witnessed a wide range of abilities. Those nearing the end who cannot walk, talk, toilet or even feed themselves contrasted with those newly diagnosed, who still maintain higher-level abilities and are able to speak for themselves. Some retain these higher-level abilities for years.
The key word is ability. So often, we focus on the "dis "of abilities, or disabilities. Instead, there is much we can learn if we focus on what people can do. With the goal of raising awareness, my site, The Caregiver's Voice, began featuring Voices with Dementia. This column provides readers a view into the world of dementia as people share details about their diagnoses and experiences.
We learn, for example, that our current care options remain limited. A younger population with dementia won't thrive in a nursing home dedicated primarily to people in their 80s. Kate Swaffer, of Adelaide, Australia, tells of her doctor advising her to give up work, get her affairs in order and prepare to live her final days. Yet, she and others are living actively engaged lives. It's been eight years, and Swaffer serves as the CEO of Dementia Alliance International, an organization for and run by people with dementia. Retired pharmacist Robert Bowles, based in Georgia, organized a massive conference after he was diagnosed, and he continues to advocate for greater awareness.
Productive Employment Opportunities
Instead of marginalizing productive people with dementia, let's offer programs to enable them to raise their self-esteem and have lives with dignity. Let's help them to regain their sense of purpose, despite living with a terminal disease. Let's enable them to feel accomplished while they can.
Current programs that employ people with Down syndrome provide a starting point upon which to design meaningful programs for people with dementia. While people who had served in high-responsibility roles (think: nurses, doctors, professors and leaders) will likely not feel productive engaging in repetitive tasks, we must listen to the voices of people with dementia. Otherwise, we lose opportunities to benefit from their services. We learn there are periods where people with dementia function at a high level followed by moments where they welcome our support and flexibility.
Remaining flexible with short-term employment or even task-based opportunities within the adult day setting is a safe place to host meaningful opportunities. When my father was diagnosed with Alzheimer's in his 80s, he had been retired for more than 20 years. Still, he wanted to work and contribute to his share of our household living expenses. Before I discovered adult day services, I took a calculated risk and asked him to fix an electrical outlet on the patio -- an item on my husband's honey-do list for six months. (Days earlier, my father had hit a low period and asked me to help him find a way to end his life, feeling he had no purpose.)
My father fixed the outlet and felt extremely proud to help around the house. I was elated, although my husband did not share my enthusiasm. "What do you mean you had him fix the outlet? He could have burned the house down!" Unfortunately, this is the attitude many people have, which perpetuates the stigma of dementia.
Fear that holds us back limits the potential of purposeful living by people who need it the most: those diagnosed with a terminal disease -- one for which there is no cure, yet.
Once my father started going to the adult day center, he saw it as his job -- he was going to "work." Five days a week, he "worked on" mechanical puzzles, discussed varying subjects and even danced with the ladies. Each afternoon, he came home feeling like a productive contributor to the household expenses. Fortunately, he never looked at his paycheck each week, since the envelop actually contained the receipt for our payment.
With health care costs rising, we must take the initiative to design innovative opportunities to reduce costs while preserving the self-esteem, dignity and sense of purpose of human beings who are given a terminal diagnosis of dementia. Beyond this, we have a legal obligation to accommodate people with disabilities in our employment practices. Instead of creating an environment of dependency, we must understand how the different types of dementia affect people's lives and be flexible in how we support them when they cannot carry out a role. Finally, we must reward and compensate those whose efforts contribute to society.
Brenda Avadian, M.A., is the president of The Caregiver's Voice, bringing family and professional caregivers knowledge, hope and joy since 1998. She is a caregiver expert speaker at state and national conferences. The author of nine books, Brenda's career includes university professor, executive coach, keynoter, corporate strategy consultant and caregiver. She also serves as a STUFFologist at STUFFology 101, where she advises people on how to declutter, while helping elders prepare to downsize. Born and raised in Milwaukee, Wisconsin, Brenda resides in rural Los Angeles County, California, and frequently hikes in the Angeles National Forest.