Dealing with changes as dementia progresses: advice for caregivers at home

As a caregiver at home for a person living with dementia, you have probably already experienced some changes in your loved one that pose an ongoing challenge. You are likely aware that these changes will continue as time progresses in the dementia journey.

David Petherbridge talks about his feelings when his wife could not recognize friends and family anymore.

Types of change in persons living with dementia 

Your loved one may exhibit confusion, anger, anxiety, agitation, and even aggression as time passes. You may notice that s/he becomes upset or looks worried more often than in earlier years. You may find that s/he has delusions or imagines things that you know do not correspond with reality as you understand it. You may notice that s/he is suspicious or even paranoid—even going so far as to accuse others of stealing or hiding personal items.

Though she may not always recognize him as her husband, David Petherbridge’s wife acknowledges his kindness as a caregiver, with an occasional kiss.

Causes of change in mood and attitude from advanced dementia

When a loved one exhibits this type of change, s/he can be reacting to a physical cause such as a reaction to a medication. It could be caused by a sudden or chronic pain—a headache, stomach cramp, or constipation. It could simply be fatigue or lack of sleep. It could be triggered by a sudden loud noise or by pressure to accomplish a task that seems daunting. It could be frustration with an inability to communicate whatever is bothering your loved one. 

Liz Sabo reminds caregivers that their loved ones’ struggles with dementia are causing the confusion about reality that is responsible for their frustration. Speaking calmly, as an equal and even affectionately, may help.

What to do when your loved one exhibits these changes

First, remember the person your loved one was and currently is, aside from the fact that s/he is living with dementia. Respect is the key. Stay calm—it does not pay to get excited—and does not bring the behavior to an end. 

Explore possible physical causes and triggers as these are often the easiest to correct. If you suspect a physical cause, arrange an appointment or a telemedicine call with your physician. If you suspect lack of sleep or sleeplessness as a cause, there are strategies that will help—avoid caffeine at night, keep to a routine with no large meal just before bedtime, keep the bedroom at an ideal temperature, and avoid TV/movies in the bedroom as they can keep your loved one from falling asleep. 

Sometimes it is helpful to provide a distraction, the way you would with a small child. If your loved one likes music, you might distract him/her with a song or a familiar tune. A word of caution: alcohol does not help a person sleep. Keep your sense of humor—sometimes sharing a laugh with your loved one can get you through a challenging period. 

Marilyn and Lauren talk about making sure Marilyn’s mom does not try to overstress her physicial ability during a visit with family.