Dementia doesn’t happen overnight. Neither does getting a diagnosis.
Still, when we think of a diagnosis, we often think of the next steps as
"decline." A gradual slipping away of memory and function. But what if we
thought of dementia differently? What if we looked at receiving a diagnosis
as the beginning of a new way of thinking and living?
For the estimated 5.7 million Americans with Alzheimer's or related
dementia (per the Alzheimer's Association's
2018 Facts & Figures report
), every day is different. No two diagnostic processes are the same. No two
journeys through the stages of the disease are the same. No two caregiving
scenarios are the same.
What is the same across the board? Ability. All people with
Alzheimer's still maintain some level of expertise, and any supports
implemented following a diagnosis should emphasize and seek to preserve
Will Dieter, PT, DPT, GCS, is
director of physical therapy clinical services
and the geriatric residency at Fox Rehab. Dieter shared some expert
insights on the process of diagnosis and what comes next — both for
caregivers and the newly diagnosed.
Why Should You Get a Diagnosis?
The most important thing to remember about dementia is that it’s not a
normal aspect of the aging process. In other words, while the risk
increases with age, just because a person is aging does not mean they will
Occasional forgetfulness happens to people of all ages and should not be
the sole indicator of dementia, or the main reason a person pursues (or a
caregiver urges the pursuit of) diagnosis. Dieter suggests tracking changes
and patterns over time. Is Mom misplacing her keys on a regular basis — and
not just losing them, but also forgetting their purpose? Is Dad putting
things in the fridge that belong in the cabinets and vice versa, and is he
doing this almost daily? Other signs and symptoms can be found in
this infographic from the World Health Organization
Another complicating factor? Many individuals are aware of the changes in
their minds and bodies and can compensate for their gradual loss of
cognitive function (essentially, covering for their deficits), Dieter
explains. So when a diagnosis is considered, they’re often midway through
the disease process.
Getting a diagnosis as soon as possible allows health care providers to
work with caregivers and persons with dementia to treat what’s treatable
and provide specialized care for each disease stage, says Dieter.
What’s Involved in the Diagnostic Process?
According to the Alzheimer’s Association, there is no single test that
shows a person has Alzheimer's. Though it’s still difficult for experts to
pinpoint the exact cause, a thorough medical evaluation is critical to
determining whether a person has dementia.
How accurate will the diagnosis be? Experts believe a skilled physician can
diagnose with more than 90 percent accuracy, per the Association.
There are four parts to the diagnostic process: a thorough medical history,
mental status and mood testing, a physical and neurological exam, and tests
(such as blood tests and brain imaging) to rule out other possible causes
of dementia-like symptoms. Do a visual walk-through of the diagnostic
via this helpful interactive
from the Alzheimer’s Association.
How Do You Preserve Independence?
After a full medical evaluation leads to a diagnosis, the temptation for
caregivers may be to take over: doing things for the individual (like
bathing and dressing) that the person can still do. But independence is not
only emotionally important for the person who's been diagnosed, but it's
also a powerful way to prevent decline, says Dieter.
The sooner you stop letting the individual do things for his or herself,
the faster the decline moves. The goal of any support a caregiver provides
following a diagnosis should be comfort and independence.
Amending physical activities to suit the person’s changing abilities helps
build reserves of motor and muscle memory, says Dieter. And the more
independence you build in at the beginning, the longer the individual
should be able to maintain it. A multidisciplinary team of a physical
therapist, occupational therapist and speech-language pathologist can
provide specialized services that wrap around the individual and help
“train the brain” — as well as teach the caregiver vital tools for daily
life for the 23 hours after the therapy session is over.
Though decline is inevitable, therapeutic interventions should not stop at
diagnosis. Regular activities and hobbies that your loved one enjoys should
not stop either. If your Mom loves trivia, find new ways to play if she
can’t read or understand what’s on the cards anymore. If your Dad loves
gardening but struggles with balance and coordination because of dementia,
do window boxes, or set up an herb garden in the kitchen. Again, building
up that cognitive reserve keeps decline at bay, says Dieter.
Routines, bulletin boards, written lists and labels are also helpful tools
for preserving independence, says
this VeryWell article
What’s a Caregiver’s Role?
Caregivers and individuals with dementia will always benefit from a network
of support, but what that network looks like may be different from person
to person. A home care provider can fill in the gaps for families, but many
older adults often resist the idea of having someone come into the home,
fearing it means a loss of independence and privacy.
As with the multidisciplinary team, a home care provider should increase
your loved one's capacity, not hinder it. A professional caregiver can work
alongside a family caregiver for success, both for the problematic present
and the even more difficult future stages. The diagnosis is just the
for more information on why caring for a loved one living with dementia is
the ultimate challenge.