Who's worse off: people with Alzheimer’s or their caregivers?
Posted Jan 08 2013 3:30am
Here’s an interesting question posed by
Alzheimer's advocate, writer, psychologist and caregiver supporter, Jennifer
Gerhold, writing on her excellent blog, Dementia Today .
"Who is worse off: people with Alzheimer’s
or their caregivers?"
Here’s the answer she gives:
“Though they look through the prism of
the future from different angles, people with Alzheimer’s disease and their
loved ones will likely find their lives dramatically altered after the onset
and diagnosis of AD.
Certainly, the person who develops the
disease is facing a life-altering and ultimately terminal disease. However,
because of the intensive care needed by people with advanced Alzheimer’s, and
the pain involved in watching a loved one gradually lose their cognitive
abilities, some people wonder if the caregivers endure more than the person
with the disease.
Every case of Alzheimer’s
disease is as unique as the individual with the disease, and every
caregiver brings unique traits to their caregiving journey. Each configuration,
also, has different resources, different support systems and different coping
skills. Thus, there is no one answer, and if there were the answer would likely
change, depending on the challenges of any particular day.”
A quick look at the Alzheimer’s journey
“At this time, Alzheimer’s disease is
considered incurable. People who develop AD tend to die from seven to 10 years
after diagnosis, though some can live as long as 20 years. Still, upon
diagnosis, the person diagnosed knows instantly that his or her life is going
to change dramatically.
Though testimonies from people with AD
illustrate that many people with dementia continue to enjoy life for a number of
years, there is no denying that their life will change dramatically, over time.
The person with AD must come to terms with
the fact that as time moves forward, he or she is likely to lose the ability to
live independently. Worse for many people, is the realisation that one’s
memories and ability to reason will likely be stripped away. Their feeling of
dignity as a human being is subject to being altered, as well.
Most people like feeling as though they
have some control over their lives. The person with Alzheimer’s lives in a
world that is increasingly confusing, and often frightening, as the stages of
the disease move forward. Making sense of one’s surroundings becomes nearly
Paranoia is an understandable development
in many people with Alzheimer’s. When the brain tells a person one thing and
everyone around this person is saying the opposite, it would be natural to
wonder if people are playing tricks on them, lying to them or even stealing
from them. Paranoid behavior in AD is quite common and causes great pain to
both the person with the disease and the caregiver.
People with the disease generally become
completely dependent on others, which is hard enough for most people. However,
with AD, the person will likely lose the ability to remember who their
caregivers are from moment to moment. Spouse, child, grandchild? Eventually,
only the feeling of being dependent on a complete stranger may remain.”
The caregiver’s journey
“Caring for a person with Alzheimer’s is
intensive and stressful and it can be all-encompassing. After a loved one
is diagnosed with Alzheimer’s disease people generally suffer through an
agonizing period of grief. It seems impossible to accept the fact that their
spouse or parent has a disease that will rob him or her of personality,
memories and the ability for self care. Yet, there is no alternative but to
accept the diagnosis and move forward.
One of the first things most people do
after the diagnosis is to plan for the inevitable changes Alzheimer’s brings.
However, with Alzheimer’s there are many variables. Some people do quite well
for months or even years. Others will decline quickly. Yet, the family must try
to look ahead at the changes that will most likely occur, and plan with their
loved one how best to manage the disease and future care.
With AD, people can change moods in an
instant. The caregiver may be constantly on edge, worrying about mood swings,
incontinence issues or the person wandering away and getting lost. Some people
with AD have significant personality changes, which is distressing to loved
Watching the slow process of Alzheimer’s
rob a loved one of memories and abilities can be excruciating. People who love
and care for someone with Alzheimer’s disease face the daily task of accepting
the losses their spouse or parent must endure, all the while knowing that at
the end of this journey they will suffer the second loss of their loved one
The paranoia that often accompanies
Alzheimer’s can turn the diagnosed person against his or her caregiver, leaving
the caregiver feeling helpless and ineffective.
Alzheimer’s disease is progressive and
there is a downward spiral through recognized stages, however that doesn’t mean
the disease leads down a straight path. This uncertainty can contribute to the
caregiver feeling uniquely alone and isolated, even when support services are
Considering the challenges that people with
Alzheimer’s disease and their caregivers face, is there any joy at all in the
For many, yes. Caregivers can and do find
joy in caring for someone they love, even if exhaustion and occasional
impatience can make them wonder how long they can continue this intensive care.
Most people eventually need to include paid outside help.
As for the person with Alzheimer’s, many
find a new determination after the diagnosis to live each day as fully as
possible. They are aware of the changes that loom in their future, which makes
the present more precious.
Who has a more difficult time? I believe
that question is like most other quality of life questions. The attitude of the
people involved, as well as their resilience, their flexibility and ability to
accept what life hands them, will make the answer to this question unique for
every Alzheimer’s family.”