Caring for someone with dementia: Tips for reducing the stress
January 25, 2024
About half of all patients with dementia or Alzheimer’s disease are currently being cared for at home, according to the American Association for Geriatric Psychiatry, in part because of the steep cost of nursing home care, which often exceeds $70,000 a year.
In addition to the financial and physical demands, most caregivers are unprepared for the stress of trying to effectively communicate with a loved one with dementia who may be prone to agitation, physical and verbal aggression, and hallucinations.
The behavioral and psychological symptoms of dementia (BPSD) can be more overwhelming than cognitive symptoms, such as memory decline. And research suggests they are more likely to contribute to caregiver burdens such as stress and depression.
It can be frustrating to watch your loved one dissolve into tears or become combative when asked to do daily tasks, such as bathing or taking medication. However, arguing with them will only escalate the situation, exacerbating your loved one’s symptoms and heightening your stress.
Over time, the cycle of caregiver burden can lead to overmedication of patients to try to calm them, and it can increase your risk of health conditions, such as:
- Anxiety and depression
- Weakened immune system, which increases susceptibility to illness and infection
- Overweight and obesity
- Chronic conditions including diabetes, cancer, heart disease, and arthritis
- Low attention span or short-term memory problems
To help lighten the load, our team in the Geriatric Psychiatry clinic at UTSW’s Peter O'Donnell Jr. Brain Institute has launched a program to help caregivers navigate the behavior changes and communication challenges of caring for loved ones with dementia. This work is part of an educational project group, led by a geriatric psychiatry fellow.
By modifying how you respond to common dementia behaviors and challenges, you can reduce conflict and the need for additional medications while creating a healthier, more harmonious environment for your loved one and family.
Communication strategies
Dementia is an umbrella term for a group of neurodegenerative disorders such as Alzheimer’s disease that affect memory, decision-making, and mood. The disease often interferes with how a person communicates. Dementia may start with difficulty finding a word or repeating phrases, and it can evolve into increased reliance on non-verbal communication.
While frustrating for you, communication barriers can be downright scary or anger-inducing for your loved one. They may become verbally or physically aggressive if you approach them in a way they don’t recognize. Here are a few ways to prevent or diffuse communication-based conflict with a loved one who has dementia.
Encourage communication with active listening
Speak clearly and slowly without interrupting.
Make eye contact, giving them your full attention.
Minimize distractions in the environment.
Let them speak for themselves and give them time to respond.
Repeat what you understood to confirm it is accurate.
Offer simple choices of one or two items only to avoid overwhelming them and creating additional confusion.
Check your body language
Try to reflect patience and kindness in your facial expressions.
Ask them to take their medication rather than demanding. They will be more likely to comply if they feel in control of the decision.
Pat or hold their hand to reassure them. Watch their body language to make sure they are comfortable with you doing this.
Try not to argue if your loved one confuses non-essential details, such as dates or names in a story they share or lapsing into past-tense when talking about the present. Arguing can confuse and upset them unnecessarily.
Chances are you will occasionally let your frustration show. That’s OK. When you sense those feelings bubbling up, take a deep breath and step away from the conversation until you calm down. This is harder than it sounds, but it will be better than feeding a preventable conflict.
Behavior strategies
Let’s look at a few of the most common behavior changes in people with dementia and strategies to help you diffuse and prevent behavior-related conflict.
Wandering or getting lost
This can be scary, particularly if your loved one still has access to a vehicle. Follow these tips to prevent and handle wandering episodes:
- Let neighbors and local police know your loved one with dementia tends to wander.
- Keep a recent photo or video of the person handy to help police.
- Add additional mechanisms to prevent easy exiting when unsupervised.
- Make sure the person wears an ID or medical bracelet.
- Consider enrolling your loved one in the Alzheimer’s Association Wandering Support Program.
Resistance to hygiene or medication requests
People with moderate stages of dementia often can’t articulate why they don’t want to do what we ask of them. You may need to do a little sleuthing. For example, if your loved one consistently refuses to take showers and gets angry when asked, it could simply be that the bathroom is cold. If this is the case, you may try to warm up the shower for five to 10 minutes to create a more comfortable environment.
Here are a few more tips:
- Try to focus on one thing at a time.
- Provide reassurance of your support and their safety.
- Try not to take mean comments defensively. Focus on the feelings behind the outbursts rather than the words.
- Don’t try to argue or reason with them.
- Try not to show your anger or frustration.
- Allow them to get up and move if it helps them think. We call this “providing space to pace.”
- Try humor, singing, or playing music to redirect mood changes.
- Reward desirable behaviors with compliments or a pleasant event, such as going for a walk, watching a movie, or having a snack.
Agitation and aggression
We’ve worked with many patients who yell and demand things they need, such as snacks, drinks, or help getting up from a chair. It’s normal to get angry in return, but that will only escalate the situation. Instead, acknowledge their needs with a calm and pleasant tone and try to help them.
Some patients may become physically aggressive, throwing items or hitting, kicking, and biting. In these situations, keep a safe distance until the behavior stops. Try to move items out of their reach that they could use to hurt you, themselves, or others. Of course, if this behavior creates an acute safety issue at home, you may need to involve emergency services or call 911.
Here are a few more tips to manage agitation and aggression:
- Build quiet times into the day along with activities.
- Ask their doctor if medication can help reduce outbursts.
- Try to find and address the cause of the behavior. Perhaps they are feeling lonely, sad, uncomfortable, or in pain, which can cause agitation.
- Distract the person with their favorite snack or activity until they feel calm.
- Speak calmly and listen to their frustrations.
Hallucinations, delusions, and paranoia
These episodes can come on without warning and can cause a spectrum of emotions, from freezing up to crying, hiding, or lashing out. Use these tips to guide your response:
- Comfort and distract them if they are afraid.
- Turn off the TV when violent or upsetting programs are on.
- Make sure they can’t reach anything that could be used to harm themselves or others.
- Try not to argue or react if they blame you for something you haven’t done.
- Ask their doctor if medication can reduce their symptoms.
Rummaging and hiding items
Don’t argue with your loved one about this habit; it is out of their control and they likely won’t remember doing it. Instead, try these strategies to reduce harm and avoid conflict:
- Lock up dangerous objects, such as knives or firearms.
- Remove valuable items that could be misplaced or hidden.
- Search the house to find frequent hiding places and remove items you find there.
- Keep all trash cans out of sight or covered. Check them before emptying in case something was hidden there or thrown away by mistake.
Getting upset about schedule changes
Changes to a consistent routine can be particularly stressful for people with dementia who already struggle with their role in time and space. Help them prepare as much as possible for upcoming changes with these tips:
- Use a large calendar with words and pictures to help them anticipate activities.
- Try not to rush them in moving from one activity to the next.
- Provide written and visual directions for daily activities and new tasks.
- Set up medication reminders. There are many options, from digital calendar reminders to automatic dispensers and medication management assistance from a home health service.
Taking care of yourself and your health
No matter how much you love your aging family member or friend, caregiving can negatively affect your physical health, mental wellness, relationships, and finances. All that stress can lead to feelings of guilt, resentment, and anxiety, further worsening caregiver burnout.
As the adage goes, you can’t pour from an empty cup. Your health and well-being matter just as much as your loved one’s. Discuss your physical and mental health with your health care provider. We can connect you with the proper care and provide access to community resources, such as:
- Alzheimer's Association, Caregiver Action Network, and the Veterans Association caregiver support websites, which offer one-on-one hotline support.
- Respite care services, in which a professional caregiver sits with your loved one while you take time for yourself.
In the Geriatric Psychiatry clinic, we’ll work with you and your loved one to address specific communication and behavioral concerns. We also work closely with specialists in the Memory Clinic and Internal Medicine and case managers to improve your quality of life at home.
Dementia is a progressive disease, so what works today may not work tomorrow. Creativity and flexibility will be crucial.
You are not alone in this journey. If you or a loved one is experiencing caregiver burnout, call 214-645-8300 or request an appointment online.
