Memory loss affects more than just the ability to recall information.
Memory loss does more than forgetting recent conversations or repeating things that have already been said. It can affect multiple aspects of someone’s life, and a caregiver may be essential to their well-being and even their safety.
“If your loved one was just diagnosed with dementia, it can be overwhelming and very scary, and you may wonder what’s going to happen,” says Nathan E. Goldstein, MD, palliative care specialist at Mount Sinai Beth Israel.
If you are a caregiver for someone with memory loss—such as from dementia—your goals are to assist in long-term planning, adapt daily routines, and provide companionship, emotional support, and structure—all while preserving their quality of life and dignity.
Exactly how much support your loved one needs will vary based on the severity of their condition. “Memory loss can often be a progressive illness that starts with just forgetting a few things and progresses to worsening problems with memory, and ultimately problems [with] function,” says Dr. Goldstein.
Challenges Caused by Memory Loss
Understanding what challenges to expect can help reduce stress as a caregiver. You can more easily anticipate issues and be proactive about handling them, and you’ll be less likely to blame yourself when new symptoms appear.
These are common challenges you might face as a caregiver of someone with memory loss:
Daily challenges include difficulty eating, dressing, and grooming on their own; the loss of ability to drive or walk; appetite loss or reduction; and possibly challenges with bladder and bowel function.
Safety concerns include wandering (especially in the case of Alzheimer’s disease); forgetting how to use household appliances or utensils; forgetting to turn things off; loss of balance; and changes to vision, hearing, sensitivity to temperature, or depth perception. All of these may result in an increased risk of falling, breaking objects, starting fires, burning themselves, or taking the wrong medications or dose.
Communication challenges include struggling to recall vocabulary; repeating familiar words; describing objects instead of calling them by their name; losing their train of thought; organizing sentences illogically; speaking less frequently; or using nonverbal gestures more than words. Repeating the same questions is one of the most common symptoms Dr. Goldstein hears from caregivers.
Emotional challenges include the pain, frustration, or embarrassment of forgetting, needing reminders, or losing autonomy. “The more somebody forgets, and the more we remind them of their forgetfulness, the harder it is and the more pain it causes,” says Theresa Altilio, ACSW, LCSW, clinical social worker at Mount Sinai Beth Israel.
How to Help a Loved One with Memory Loss
Once you can anticipate challenges, it’s easier to come up with an action plan as a caregiver.
With mild memory loss, you can help your loved one with simple day-to-day logistics. You can help the keep track of their appointments or events, remember words and names, manage finances and pay bills, keep track of medication, plan for the future, and provide or arrange transportation.
You can help keep the memories alive by reminiscing together and looking at pictures together, suggests Altilio.
If memory loss progresses, especially in the case of Alzheimer’s disease, caregiving may be more hands on. You can help them adapt their routines, create structure, assist in dressing and grooming, cook and get groceries, and provide engaging activities to prevent frustration and wandering. At this point, a daily care plan—which includes basic routines and schedules—can help provide structure and take advantage of the time of day your loved one is most alert or active.
In severe cases of memory loss or late stages of Alzheimer’s, you as the caregiver may need to provide more constant care. You can help them monitor eating and drinking water to prevent malnutrition or dehydration, monitor weight, set a toilet schedule and monitor bowel movements, improve circulation by adjusting their position every couple of hours, bathe and groom, perform gentle exercises to prevent “joint freezing,” assist in oral and bodily hygiene to prevent infections, and monitor for signs of pain or illness.
Regardless of what kind of assistance your loved one needs, it’s important for you to find ways to cope with caregiver stress, and to not feel guilty for feeling frustrated sometimes.
“It’s really difficult to accurately explain the frustration of caring for someone with dementia,” says Kenn Voegele, caregiver and activist. “It’s almost impossible not to yell, not to scream, not to walk out the door, and feel like, ‘I’m never going back.’”
“It’s important to remember that all of these emotions and reactions are normal, and that all caregivers feel this when caring for someone with memory loss,” says Dr. Goldstein.
Prioritizing your self-care as a caregiver can help you stay physically and emotionally healthy and strong, which can help you provide the best care to your loved one.
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If your loved one was just diagnosed with
dementia, it can be overwhelming and
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very scary, and
you may wonder what's going to happen.
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These are all common, normal questions
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that everyone asks when their loved one
is just diagnosed with memory loss.
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Memory loss can often be a progressive
illness that starts with just forgetting
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a few things and progresses to
worsening problems with memory.
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And ultimately problems with
things like function and
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being able to dress, and
get out of the house.
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I think there are lots of
challenges to caring for
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someone with memory loss day to day.
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One of the most common things
that we hear from caregivers
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is they keep asking the same
question over and over and
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over and that can be really stressful for
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It's important to remember that
they're not doing it to annoy you, or
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to make you angry, but
instead they just don't remember.
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The more somebody forgets, and the more
we remind them of their forgetfulness,
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the harder it is and
the more pain it causes.
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So sometimes it's really interesting to
actually join them in that conversation.
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Do you remember when you got this job?
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Do you remember when you had that job?
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What was most meaningful
to you about your work?
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So that you're creating meaning
from the memory, if you will, and
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you become the presenter of the memory.
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There's so many nice things that
have to do with reminiscence.
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So looking at pictures together,
do you remember this?
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Do you remember our wedding?
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Do you remember whatever
the christening and so on and so forth.
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So, you are creating in that moment,
moments of value and
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meaning to the person and
also to yourself.
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In addition, I think caring day to day
for someone with memory loss can include
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things like taking care of things like
making sure there's food in the house.
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Making sure that the bills are being paid,
making sure they're getting to their
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doctor's visits on time, and making sure
that they have the care that they need at
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home to help with things like bathing,
and dressing, and feeding themselves.
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I think it can also be difficult
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when caregivers realize how stressful
it can be to care for their loved one.
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Often caregivers feel burdened,
or angry, or sad, and
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then they feel guilt because they
feel burdened or angry or sad.
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It's really difficult to accurately
explain the frustration of caring for
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someone with dementia.
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Simple things don't happen; asking someone
to go set the table doesn't work anymore.
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Moving something, they think you stole it.
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It's almost impossible not to yell,
not to scream,
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not to walk out the door, and
feel like I'm never going back.
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I'm throwing the keys over my shoulders,
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And it's important to remember that all
of these emotions and reactions are normal
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and that all caregivers feel this when
caring for someone with memory loss.
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What you need to make
sure that you never do
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is live this journey in isolation.
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You have to seek outside help and support.
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Healthy practices when caring for
someone with memory loss include things
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like making sure you're getting
out of the house every day.
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Trying to make sure that there are other
people who may be able to spend time with
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your loved one with memory loss so
that you can have a break.
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It's important that you take care of
yourself over the course of the memory
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loss to make sure that you can continue
to help your loved one in every way
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Activities. Chicago, IL: Alzheimer’s Association. (Accessed on November 20, 2018 at https://www.alz.org/help-support/caregiving/daily-care/activities.)
Be a healthy caregiver. Chicago, IL: Alzheimer’s Association. (Accessed on November 20, 2018 at https://www.alz.org/help-support/caregiving/caregiver-health/be_a_healthy_caregiver.)
Caregiving. Chicago, IL: Alzheimer’s Association. (Accessed on November 20, 2018 at https://www.alz.org/help-support/caregiving.)
Communication and Alzheimer’s. Chicago, IL: Alzheimer’s Association. (Accessed on November 20, 2018 at https://www.alz.org/help-support/caregiving/daily-care/communications.)
Safety. Chicago, IL: Alzheimer’s Association. (Accessed on November 20, 2018 at https://www.alz.org/help-support/caregiving/safety.)