Alzheimer’s disease is a progressive, degenerative brain disorder that affects memory, thinking, and behavior. It is the most common form of dementia, accounting for 60-80% of all dementia cases. As of 2020, over 6 million Americans are living with Alzheimer’s, and this number is projected to rise dramatically as the population ages.
Caring for someone with Alzheimer’s disease can be exceptionally difficult. The person’s memory loss, confusion, personality changes, and other symptoms often lead to misunderstandings, frustration, and hurt feelings on both sides. Knowing what not to say to someone with Alzheimer’s is crucial for maintaining their dignity and your positive relationship. Here are some tips on phrases and types of statements to avoid when communicating with an Alzheimer’s patient.
Avoid corrections and memory tests
When a person with Alzheimer’s states something incorrect, contradicts themselves, or cannot recall a name or event, our natural tendency is to want to correct them or test their memory. However, this response often leads to defensiveness, agitation, and shame in the Alzheimer’s patient. Better approaches are:
– If a fact is incorrect but harmless, let it go and gently redirect the conversation. Argue or debating facts will likely only increase anxiety and confusion.
– If they cannot recall a name or fact, discretely provide the information again. Avoid saying “I already told you this” or “Don’t you remember?”
– Repeat information patiently and concisely as needed. Do not demand they repeat it back to test their memory.
– Focus on the emotions behind what they are trying to communicate, not just the details.
Avoid infantilizing language and tones
It can be easy to slip into patronizing communication when someone is having memory and comprehension difficulties. However, Alzheimer’s patients need to have their dignity respected like anyone else.
– Avoid baby talk, overly-simple vocabulary, speaking in the third person (“Does Susie want some juice?”), and exaggerated enthusiasm. Use a normal, calm adult tone.
– Don’t refer to them as “dear,” “sweetie,” or other diminutive pet names unless that was your habit prior to their illness.
– Respect their personal space and don’t treat them like a child.
– Conversely, also avoid speaking sharply or issuing demands as if scolding a child. Be patient and sympathetic.
Avoid arguing about delusions
Many Alzheimer’s patients experience delusions like believing strangers are in the house or that a deceased loved one is still alive. Rather than arguing the delusion isn’t real, it is better to employ distraction and validation.
– Avoid direct denials and logical arguments against the delusion. The patient is not deliberately lying and will likely just become more insistent if you assert they are wrong.
– Distract them with a walk, snack, television show or other activity.
– Validate their feelings and concerns without supporting the delusion itself. “I know this seems real to you, but I’m not seeing the same thing right now.”
Avoid unfamiliar environs and too much stimulation
New environments and situations involving lots of sights, sounds and people can heighten confusion and anxiety for Alzheimer’s patients. When possible:
– Make introductions to new people or environments gradually. Don’t overwhelm them.
– Keep home decor, furniture layout and household routines consistent. Dramatic changes can be very disorienting.
– Avoid crowded, noisy events like restaurants or stadiums. These can overstimulate their senses.
– If they become upset or agitated, speak in a calm, reassuring voice while minimizing surrounding stimulation.
The stress of Alzheimer’s disease can manifest in uncharacteristic anger, suspicion or defensiveness in patients. Confronting these behaviors often backfires. Use these approaches instead:
– If they make an accusatory statement, avoid direct contradiction. Acknowledge their feelings in a gentle, diplomatic way.
– If a request is unsafe or unreasonable, present alternatives rather than just saying “no.”
– Be willing to stretch the truth, omit upsetting details and employ harmless white lies to diffuse confrontations when necessary. Some battles are not worth the distress they cause.
– If they become increasingly upset or hostile, redirect their attention or leave the room yourself to de-escalate things.
Avoid profanity and shocking language
The language filters in an Alzheimer’s patient’s brain tend to deteriorate. They may begin using inappropriate words or making sexually explicit statements. Caregivers should:
– Strive to not appear shocked or upset, as this can prompt the patient to use the language more often. Calmly redirect to more appropriate topics.
– Politely say, “Please don’t use that word with me.” If behaviors persist, consult their doctor about potential therapies.
– Do not confront them with heavy topics like infidelity, divorce, abuse or criminal behavior without first discussing it with their doctor. This can agitate severe reactions.
Avoid barrage of questions
Excessive questioning quickly overwhelms and frustrates someone with dementia. When helping guide them through daily tasks:
– Give one step-by-step instruction at a time. Wait until they have completed it before the next cue. Too many directions at once is confusing.
– Pause between instructions to allow time for comprehension. Silent gaps are OK.
– If they don’t respond, gently repeat the direction once using the exact same wording, or gesture along with your words.
– Offer gentle encouragement and allow ample time for them to respond without peppering them with more questions.
Self-Care for Alzheimer’s Caregivers
Caring for a loved one with Alzheimer’s disease places huge emotional, physical and mental strains on you as the caregiver. Here are some vital self-care skills to practice:
Take regular breaks and “me time”
– Even if you have home health aides or other family helping, make sure to plan daily breaks just for you – out of the house if possible.
– Schedule regular getaways with friends, exercise classes, movie nights or whatever energizes you. Don’t feel guilty – you need to recharge.
– Ask family to “fill in” while you take a vacation for your own mental health. You deserve it.
Join a Caregiver Support Group
– Local Alzheimer’s Association chapters offer excellent free caregiver support groups, both in person and online.
– Support groups allow you to share struggles, successes, practical tips and resources with other Alzheimer’s caregivers. You realize you are not alone.
– Make use of free Alzheimer’s helplines and counseling resources too. Ask doctors for referrals.
Mind Your Own Health
– Make regular doctor visits to stay on top of your health as caregiver stresses take a toll.
– Eat a balanced diet, exercise, and avoid unhealthy coping mechanisms like excess drinking. Enlist a friend’s help in maintaining healthy habits.
– Aim for restful sleep, though that’s admittedly difficult as an Alzheimer’s caregiver. Speak to your doctor if insomnia is an issue.
Accept Your Limitations
– You cannot single-handedly stop the progression of their Alzheimer’s. Let go of guilt over what you “should” be doing and focus on each day.
– Setting limitations does not mean you love them any less. You must care for yourself to be able to keep caring for your loved one.
– If their needs eventually exceed what you can provide at home, there are excellent residential Alzheimer’s care facilities available. This does not make you a failure.
Tips for Connecting with a Person with Alzheimer’s
Even as verbal communication becomes more challenging, connecting on a heart-to-heart level is still possible with a person in the later Alzheimer’s stages. Focus on these strategies:
Engage the Senses
– Bring out familiar music, photos, videos, smells and tactile objects to provide sensory comfort and stimulation.
– Cook or bake their favorite treats to trigger nostalgia through scent and taste.
– Wrap their hands around a cup of coffee or other warm drink for soothing comfort.
Go for Walks Together
– Take regular walks outdoors, pausing to look at trees, flowers, fountains and nature scenes. This engages multiple senses.
– Point out sights, sounds and smells you encounter to weave simple narratives for them about your shared environment.
– Hold their hand during the walk for an anchoring sense of touch.
Do Creative Activities Side-By-Side
– Sit together coloring, painting or listening to music at home. Provide large sheets of paper and washable markers/paint so they can create freely.
– Work on simple arts, crafts or other projects together at a table. Engaging different senses helps involve them.
– The act of sitting together focused on a calm, creative activity can be very centering. Don’t worry about the outcome.
Express Love Clearly
– Verbally say “I love you” clearly and repeatedly, holding eye contact. Physical touch like hugging is also very meaningful.
– Remind them frequently who you are, how you are related, and how much you care about them. Use concrete terms like “your daughter” rather than just a name.
– Convey love and reassurance with your tone of voice, facial expression and body language. Even if they don’t understand your words, they will feel your essence.
Caring for someone with Alzheimer’s disease requires an abundance of patience, empathy and stamina from loved ones. By avoiding problematic communication approaches and focusing on connection over correction, you can enrich the quality of life for both the Alzheimer’s sufferer and yourself. Don’t forget self-care. Seek support. And remember that deep feeling and recognition can endure even after memories and words fade.