Dementia is a progressive cognitive disease. It's not curable, but it can be managed in the early stages. Eventually, however, this brain disease will progress to the point that it requires full-time care in an assisted living home or memory care home.
The staff here at Weatherly knows how devastating a dementia diagnosis can feel. It can be shocking. There may be a period of denial or grief among the family. Still, thinking back, you might recognize some symptoms and behaviors associated with dementia in your loved one.
People diagnosed with Alzheimer's Disease (AD) or dementia find it difficult to remember things, think clearly, communicate with others, and care for themselves. Dementia can cause severe mood swings and change a person's personality and habits.
This article is meant to provide families with helpful strategies and tactics to cope with troubling behavior problems and communication challenges. We'll cover ways to adjust your communication with your loved one, and we'll also touch on mealtimes and hygiene issues you should expect.
If you have other questions about dementia care, contact us.
Learn to Adapt Communication for Dementia / Alzheimer's Disease
As a new caregiver, you will quickly discover that a positive mindset and a humorous attitude can go a long way to helping both you and your family member cope with dementia. Follow these tips:
- Get their attention. When you need to have an important discussion with your loved one, limit the noise and distractions. Turn off the TV, shut the door, or move to quieter surroundings. Address your family member with their name. As dementia progresses, you might need to identify yourself, too. Then use non-verbal cues like holding his or her hand or pointing to the focus of your conversation.
- Set a positive mood. Speak to your family member in a lighthearted and pleasant tone. Use a smile and physical contact to help convey your message and show your affection.
- Speak clearly. Use simple words and sentences. If your loved one doesn't understand a statement, repeat your message as a question.
- Use the names of people and places.
- Ask simple questions. Rather than asking your parent what they'd like to wear today, offer them a choice of two and allow them to point.
- Be patient. If your family member struggles to find the words, it's okay to help by gently suggesting words. Watch for nonverbal cues and body language. Always strive to listen for the feelings that underlie the words.
- Learn to distract and redirect. If you're a parent, you might already be a pro at distraction and redirection. When your family member becomes frustrated or agitated, change the subject or the activity.
- Reassure them often. AD and dementia feel confusing and scary. Your family member might accuse you of things that never happened, and that can be hurtful. You don't need to convince them of the truth. Instead, focus on their feelings (which are real) and try to comfort them. Holding their hand, hugging them or praising them for a task will go a long way!
- Maintain your sense of humor, but not at their expense. Individuals with dementia or AD retain a good sense of humor and are delighted to laugh along with you.
Now that you've got a list of skills to work on, it's time to prepare yourself for some personality changes.
Prepare for Personality Changes and a Rollercoaster of Behaviors
One of the symptoms of Alzheimer's disease or dementia is frequent mood changes. You may have noticed your family member having rapid mood swings from day to day or even hour to hour. The distraction that works today might not work tomorrow.
New caregivers are sometimes surprised and utterly confounded by seemingly bizarre repetitive actions. For instance, perhaps your loved one empties their dresser every day and stacks clothing on the bed. Or maybe they pull every pot and pan out of the cupboards in the afternoon.
Rather than getting upset at them for their behavior, and putting a negative tone on the day, try to understand the need they were trying to fill. For many older adults with dementia, it's a need for activity.
Understand that your family member filled their days with meaningful activity before their diagnosis. Perhaps they were active in their church or social clubs, made family dinners, visited the salon regularly and went shopping. They don't have the words to describe their need for activity, but you can probably redirect that need to a simple but necessary household task — like pairing all the socks in the laundry basket.
Expect Incontinence: Accidents Happen
Toileting issues and incontinence are other symptoms of dementia that you may have noticed before a diagnosis of dementia or AD. This is also one of the key activities of daily living (ADLs) that help us understand someone's cognitive abilities. For many families and caregivers, severe incontinence issues is a sign it's time to look into professional care in a memory care home.
Paranoia is a common symptom of dementia. It can also be the most troubling and hurtful for the surrounding family if they don't know what to expect.
Per the Alzheimer's Association "Delusions (firmly held beliefs in things that are not real) may occur in middle-to-late-stage Alzheimer's. Confusion and memory loss — such as the inability to remember certain people... can contribute to these untrue beliefs."
- Your loved one with dementia might accuse a close family member of stealing or suspect the police are following him or her. We call this type of suspicious delusion paranoia.
- Know that this situation feels completely real to your family member. It can be easier to maintain a positive attitude once you realize that your family member is trying to make sense of the world through declining cognitive function.
Another troubling time for caregivers often happens at bedtime.
Everyone has occasional trouble sleeping, but people with dementia can have a much harder time. The Mayo Clinic says sleep disturbance affects up to 25% of people with mild-to-moderate dementia and roughly half of those with severe dementia. Know that sleep disturbances tend to get worse as dementia progresses.
Individuals suffering from cognitive decline also experience a phenomenon in the evening hours or at night called sundowning. This might manifest as confusion, agitation — even aggression! Evenings like this can lead to dangerous wandering. If your loved one is becoming combative at night or developing a habit of wandering in the evenings, it's probably time to seek professional care. We've written more about wandering here.
This leads us nicely into our next coping skill for dementia caregivers: environmental concerns in the home.
The Value of a Truly Safe Environment for People with Dementia
If you've brought your aging parent or grandparent into your home for better care, we admire your choice! You will need to take special precautions and "senior proof" your home. Think of it like "baby-proofing" but for a much larger person with limited cognition and other health issues.
Some specific actions to consider:
- Removing items that can cause a trip and fall, like area rugs or extension cords.
- Moving medications to a less visible, difficult to reach place (like the top of the refrigerator)
- Adding a simple lock high on the exterior doors, well above eye level, prevents them from "escaping" at night.
You'll also need to make some adjustments to mealtime.
Meals Might Get Complicated
Feeding oneself is another of those activities of daily living we mentioned above. Aging adults with dementia might forget how to use eating utensils or even fail to eat entirely!
Still, nutrition plays a vital role in all aspects of your loved one's health, including cognitive function. You'll need to adjust your dining habits. For instance, you won't want to serve very hot liquids like coffee or soup. You'll also find it helpful to offer several small snacks to your family member throughout the day. Snacks that are easy to chew and clean up — like cheese sticks or banana slices — should always be on hand.
You'll also need to help your family member with personal hygiene.
You'll Have to Help with Hygiene.
As a new caregiver, you'll quickly discover that your loved one needs more than a reminder about hygiene. You'll need to help them bathe a few times a week, and it's a good idea to install grab bars in the shower and buy a shower seat. Since your family member isn't going out to work or socializing as much, they may only need their hair washed twice a week, but dental care is more important than ever!
- Your family member might not have the words to describe mouth pain or dental issues, so get in the habit of helping them brush their teeth twice a day now. It will be less of a fight later if you build this routine now.
Most of all, know when it's time to find caregiver support.
You can find support from other family members, doctors, professional care providers, and caregiver support groups. Caregiver burnout is a genuine concern (you can learn more about it here.) It takes a village to care for advanced dementia patients, and Weatherly Inn is here to help. We offer different care types, like respite care, for caregivers who need a few hours or a few days to handle other situations (or just get some rest).
If your loved one's dementia is progressing to the point where it's too much to handle on your own, it may be time to move them into a community that can give them round-the-clock care. Check out our specially designed Memory Care program to see how we can support your needs, and schedule a tour today.
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