Caring With, Not For, Someone Living with Dementia

If you are caring for someone living with dementia, you have probably discovered that there is
no single rulebook. Every person brings a lifetime of memories, preferences, and personality to
their experience of the disease. Good care becomes less about following a script and more
about knowing and validating the person in front of you.
Care should be done with someone, not for them. That small shift in language reflects
something important. It is the difference between preserving someone's dignity and quietly
taking it away.

When Someone Repeats Themselves or Forgets
Short-term memory loss is one of the most common symptoms of dementia, and it can be one
of the most emotionally difficult for families to navigate. When a loved one asks the same
question again and again, the instinct to correct is understandable, but it can often add stress
rather than relieving it.
What tends to work better is meeting the person where they are. Familiar routines offer structure
and safety. A simple calendar of upcoming events can help with day-to-day orientation. When
someone repeats a question, try answering calmly each time, sometimes adding something
small and new to the response. When memory loss becomes more advanced, the most
compassionate response is often to enter someone's reality rather than pull them out of it.

When Emotions or Personality Seem to Change
Dementia can bring unexpected shifts in mood, behavior, and personality. For families, watching
those changes unfold can feel like grief. Those feelings are completely valid.
When a person living with dementia becomes frightened, sad, or agitated, their emotions are
real even when the cause is not. Challenging or correcting them rarely helps and can deepen
distress. Instead, try validating what they are feeling with a calm tone, a reassuring word, and a
willingness to sit with them in the moment. This can do more than any explanation. Avoid
arguing, redirect toward an activity they enjoy when the moment allows, and give them room to
express what they are feeling without rushing to fix it.

When Personal Care Becomes Difficult
Hygiene and physical care are areas where dignity is especially easy to overlook. The goal is to
involve the person as much as possible in their own care rather than taking over entirely. Ask
discreetly if they need help rather than assuming. If the person definitely needs help, try to
engage them as a collaborator as much as possible. Use preferred items and familiar routines.
This can make the experience feel less disorienting. Narrating what you are doing in a calm,
matter-of-fact way can also help. Small things like these make care feel collaborative rather than
something being done to someone.

Caring for the Caregiver
None of this is easy, and it cannot be sustained without support. According to the Alzheimer's
Association, more than 11 million Americans provide unpaid care for someone living with
dementia. The physical, emotional, and financial toll is significant, and it rarely gets the attention
it deserves.
Being a prepared caregiver means building a support network, having important documents in
order, and taking your own well-being seriously. Know your limits and name them. Accept help
when it is offered. If you are finding it hard to sleep, eat, or think about anything other than
caregiving, that is a sign you need support too, not a sign you are failing.

JFS's CARES program offers up to 48 hours of free in-home respite care for caregivers who
need time to rest, attend to their own needs, or simply recharge. The Alzheimer's Association is
also a strong resource for education, local support groups, and planning guidance.
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You do not have to figure this out alone. Reach out to CARES Manager Roberta Hirshon at
207-233-1051 or [email protected] to learn more about caregiver support services