If you have a loved one with dementia, you know that the experience is an evolving journey. Maybe it was just memory lapses in the beginning. But before long your loved one might have experienced more dementia-related behavioral changes. One day, you’re just offering small nudges. The next, you’re providing full-time care, including giving medications, cooking and feeding meals, and even bathing. Sound familiar?

BEHAVIORS TO EXPECT

As your loved one’s dementia progresses, you will encounter more dementia-related behavioral changes. You will find yourself constantly reassessing and readjusting. Here are some common behavioral expressions of dementia and ideas for how to cope.

Irritability and Mood Swings

Example: Mom is angry because she wants to drive her car when you’ve taken away her keys long ago.

What to do:

  • Provide gentle reassurance. Validate your loved one’s feelings with a soft voice to ease their distress.
  • Distract and redirect. Shift your loved one’s focus to another activity.
  • Identify and reduce the triggers. Look for patterns in your loved one’s behavior. What might be setting them off? Is it loud noise? Unfamiliar settings? Are they overstimulated? Reduce these to stave off negative behavior.

Resistance To Daily Tasks

Example: Dad is refusing to get dressed in the morning and doesn’t want to bathe.

What to do:

  • Give them options. Offering small choices (i.e. “Would you like to wear the blue shirt or the red shirt today?”) can give your loved one a sense of control..
  • Take a break. If your loved one is fighting you, take a timeout. If it’s safe to do so, step away for a few moments. Try again when you both feel calmer.
  • Keep a consistent routine. Having a schedule with set bedtimes, wake-up times, and mealtimes offers stability and comfort.
  • Set a positive mood. Play relaxing, familiar music during bath times. Get rid of any distractions.
  • Build in extra time. Overestimate the time you will need for tasks, especially if you have to be somewhere at a certain time. Feeling rushed just leads to frustration.

Trouble Eating

Example: Grandma doesn’t have an appetite lately and won’t eat more than two bites at lunch.

What to do:

  • Set the ambience. Dim the lights a bit and play instrumental dining music during meals. Turn off the TV. Sit in their chair to make sure it’s comfortable and that they can reach the table easily.
  • Check her utensils. Swap out utensils for ones that are easier to use.
  • Change up the menu. Try serving softer foods or more finger foods to make it easier to eat independently.
  • Switch the frequency. Instead of offering three traditional meals, experiment with serving smaller, more frequent meals.
  • Lend a hand. Remind them how to eat and guide them through the meal. You might point to utensils and demonstrate how to eat. Later, you may have to feed them directly.

Your loved one’s behaviors and needs may change quickly. What works today may not work tomorrow, so flexibility is key. Caregiving is a balancing act that requires managing your loved one’s health, as well as your own.

THE IMPORTANCE OF SELF CARE

Taking care of someone with dementia can become more and more demanding and unpredictable. As time goes by, the responsibilities can feel overwhelming. In a study about caregivers, one adult child felt a deep sense of obligation to care for his mom.

“My mother took good care of me growing up. Now is my turn to take care of her, but sometimes I feel like I am not doing enough for her. It’s always fighting inside me,” he said.

Frustration, exhaustion, and guilt are common feelings that caregivers face as they struggle to balance responsibilities. In fact, over half of caregivers say they have high stress and about 42% report experiencing anxiety. The chronic pressure can take a massive toll on your body.

Unfortunately, you won’t be able to care for anyone else if you are sick yourself. Practicing self-care is essential in helping prevent burnout. Basic self-care includes getting high-quality sleep, eating nutritious meals, drinking plenty of water, and exercising regularly.

In addition, many caregivers find that meditation, affirmations, or prayer can help improve mindfulness. Other practices include using grounding exercises and journaling. Self-care also involves taking breaks. This can include short daily breaks and taking turns caregiving with other family members when possible.

All of this may sound well and good. But how? As another participant in the study, a daughter-in-law, commented, “I have health problems also, but no time to take care of myself. The dementia problem is bigger than my problem.”

How can you take care of yourself when the responsibilities of caregiving seem to take all of your time and energy?

RESOURCES FOR ONGOING SUPPORT

Caregiving is a massive undertaking, and you can’t do it alone. The good news is that help is available. Support can come in many different packages. Here are a few ideas.

Local Dementia Organizations

Two great Central Florida organizations that Charter Research is pleased to work closely with are the Alzheimer’s and Dementia Resource Center (ADRC) and Coping with Dementia. Both organizations provide a number of different services and help, from education and training to informative newsletters and physician referrals.

Respite Care

Respite care offers temporary relief by providing a trusted caregiver to look after your loved one so that you can take a break. The state of Florida has several programs related to respite care that are administered by local Aging and Disability Resource Centers (ADRC). For information in Orange, Brevard, Osceola, and Seminole Counties, contact the Senior Resource Alliance at (407) 514-1800. To get assistance in Lake, Marion, Sumter, Polk and other Central Florida counties, contact Elder Options at (800) 262-2243.

Counseling

Speaking with a qualified therapist can do wonders to help you manage all of the emotions related to caregiving and help boost your mental health. Therapy provides a judgment-free way to openly express your feelings without the weight of family dynamics, obligations, or past resentments. You can have honest, unfiltered conversations with a trained professional who has no personal stake in the situation.

If you have insurance, check your benefits to see if counseling services are included. Some policies cover tele-health sessions with local therapists and even online therapy offered by companies like BetterHelp or Talkspace. In addition, faith-based counseling services may be available at your church, synagogue, or mosque. If you need help finding a therapist, you can also contact the Mental Health Association of Central Florida and ask about their referral program in several Central Florida counties.

Support Groups

Many caregivers also enjoy having an emotional outlet through support groups. These peer groups are community gatherings where you can connect with other people who are also caring for loved ones with dementia. Support groups often provide safe spaces to make friends, vent, and share ideas to make caregiving easier. Charter Research currently offers free support groups in The Villages including:

First Steps: Living Well with Cognitive Impairment

Dementia Caregiver Support Group

Dementia with Lewy Bodies Support Group

You can also learn about tips and tools for caring for someone with dementia through some of our in-person Lunch & Learns. Visit our Events page to see what’s coming up.  

You are not alone in this. Caregiving can feel isolating at times, but there are people, resources, and communities ready to support you. Small steps can make a world of difference. Remember, caring for yourself is not selfish; it’s vital.

*This article is for informational purposes only and is not intended as medical advice. To get support right now, text TOUGH to 741741 for free, 24/7 crisis counseling. If you or your loved one are in immediate danger or experiencing a medical emergency, call 911 or seek professional medical assistance.