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The Biggest Issues Dementia Caregivers Face

dementia caregivers

Did you know there are different kinds of dementia? Some vitamin deficiencies and drug reactions cause dementia. Those types of dementia can improve.

Alzheimer’s, vascular damage, and nerve damage in the brain produce progressive dementias. The symptoms worsen and aren’t reversible.

It’s a challenge to care for someone with progressive dementia. What begins as reminders for occasional forgetfulness develops into full-time caregiving.

Dementia disorders are difficult and unpredictable. This post discusses the biggest issues dementia caregivers face. It also offers ways to cope with them.

If you care for someone with dementia keep reading. 

Challenges Faced by Dementia Caregivers

Caregiving for someone with dementia looks manageable at the start. Yet, often it becomes a long-term responsibility with many difficult tasks.

In the United States, over 43.5 million adults give unpaid care to an adult or child. Most of those caregivers (34.2 million) cared for someone over the age of 50.

The average family caregiver spends 24 to 40 hours per week on caregiving duties. That care includes help with activities of daily living, such as: 

  • Bathing
  • Dressing
  • Eating
  • Personal Hygiene Functions 
  • Getting In and Out of Bed or a Chair
  • Medication Management

Caregivers also provide transportation, grocery shopping, meal prep, and household chores.

Many unpaid dementia caregivers experience emotional and health-related problems. Let’s look at the biggest issues related to dementia caregiving.

Overwhelmed by Caregiving Tasks

Caregiving becomes harder as the disease progresses. Problems like incontinence and wandering are a daily issue. Keeping track of someone who wanders is scary. Someone with dementia can’t tell anyone how to help them return home.

A small woman caring for her large husband is at risk when helping him in and out of bed. She can strain her back, or he could fall on top of her.

Daily challenges can become too much for the caregiver to manage alone. Here are some suggestions:

Incontinence

First, find out if the incontinence is from an infection or medications. Sometimes, it’s fixable. The use of adult diapers and a regular bathroom schedule prevent accidents.

Wandering

Use all the tools available to prevent wandering. Use door and bed alarms. Put extra locks up high on doors so your person can’t reach them.

Get a wearable GPS tracker necklace or bracelet. Some devices attach to clothing.

Ask for Help

Find part-time help and respite care programs. If you need help with bathing, dressing, and toileting hire an aide to assist you.

Don’t try to handle everything alone. Share caregiving tasks with family members. Ask friends, doctors, and Alzheimer’s professionals for advice and guidance.

When caregiving takes all your time you can lose touch with the outside world. That can lead to isolation and depression. Balance caregiving with the rest of your life by asking for help. 

Take a Break

Many assisted living communities offer day programs and weekend respite care.

The person with dementia enjoys meals and activities under watchful professional care. At the same time, the caregiver gets a needed break.

Loss of Privacy

Many family caregivers experience a lack of privacy when they move a loved one into their home. If other people live in the house, everyone’s personal space is at risk.

People with dementia forget what is and isn’t acceptable. They may walk in on you in the shower, or wake you in the middle of the night.

Besides physical space, caregivers need private time for emotional and mental health. It’s hard to set boundaries with someone who can’t remember the boundaries.

But, it’s important to maintain family time and routines for other members of the household. If privacy isn’t managed, everyone gets angry and resentful.

Below are some solutions for a lack of privacy.

Create a Separate Space

If you have a live-in elder, adapt the home so they have their own space. The ideal setup includes a bedroom and a living space. Fill the area with personal belongings, a TV and comfortable seating.

Avoid having a child share the room. Dementia patients often move and hide things.

Does the elder have assets to help pay for an addition to the home? When funds are available, modifying the home to create extra space works best.

Set Up Household Guidelines

When an elder joins a home with children, establish rules for everyone. Look at areas of potential conflict, like TV and kitchen use, and set guidelines.

Rules won’t work as the disease progresses but may help with the initial transition period. Explain the disease to children so they understand dementia-related behaviors.

Add locks to manage intrusions. Put valuables in safe places. Teach family members how to redirect dementia-related behaviors.

Sleep Deprivation

Lack of sleep becomes an issue at the time caregivers need it most. That’s due to the disruption of sleeping and waking cycles in the person with dementia.

A person with Alzheimer’s may stay up all night. Or, they may wake the caregiver several times during the night.

Sleep deprivation adds stress to the caregiving situation. Everyone becomes tired and cranky. Clear thinking and physical health are at risk.

Don’t Assume Lack of Sleep is Normal

Many caregivers think poor sleep is part of aging or dementia. Yet, there are ways to resolve sleep issues.

Good sleep benefits the elder with dementia as much as the caregiver. Try these ideas for a good night’s sleep.

Set the Scene

Cut caffeinated and alcoholic drinks late in the day. Plan restful, soothing activities before bedtime.

Create a quiet, dark bedroom. Make sure the mattress, pillows, and blankets are comfortable.

Don’t let the elder fall asleep in a lounge chair in their clothes. Establish a bedtime routine to promote sleep.

Caregivers should follow this advice, too.

Review Medications

Check with a doctor to be sure medications don’t affect sleep. Some meds used for depression prevent sleep.

Encourage Daytime Activity

Don’t let your elder sit in a chair all day watching TV. Long walks outside, crafts, and other activities during the day help people sleep at night.

Naps are nice since they give caregivers a break, but keep them short. Don’t let them sleep the day away or you’ll both be up all night.

As the disease progresses it may get worse. If you’ve tried everything and it isn’t working, talk to the doctor.

Not Anticipating the Future

Every day with dementia feels like a constant emergency. All attention is on the problem at hand. But it’s important to expect future caregiving needs.

Some caregivers don’t want to think about the future. They hope things won’t get worse.

Yet, dementia has definite stages. When you know what’s coming it’s easier to make educated plans. Otherwise, each phase is another emergency.

Talk to other caregivers and professionals. Ask your doctor to explain where your loved one is now, and what to expect next. Join a dementia support group to learn from others in the same situation.

This will help you plan everything from home modifications to assisted living care.

It’s Time for Professional Help

Family caregiving is an act of love. When caregivers get overwhelmed or the situation is dangerous it’s time to make a change.

Moving someone with dementia into Memory Care improves the situation for everyone. Your elder receives 24/7 care from a professional team. It includes socializing with other residents, meals, activities, and medication management.

Family dementia caregivers aren’t exhausted and overwhelmed. They can spend time with loved ones in an enjoyable way again.

For more information on our custom approach to Memory Care, contact Seasons. Please visit us for a tour of our state-of-the-art memory care community.