Caregivers of Alzheimer’s Patients
Taking on the responsibility of caring for your loved one may be challenging, but it also represents deep compassion, love, and selflessness. People with dementia from conditions such as Alzheimer’s and related diseases have a neurodegenerative disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, and take care of themselves. In addition, dementia can cause mood swings and even change a person’s personality and behavior.
Some of the greatest challenges of caring for a loved one with dementia are the personality and behavior changes that often occur. You can best meet these challenges by using creativity, flexibility, patience, and compassion. It also helps to not take things personally and maintain your sense of humour.
Caregivers cannot stop Alzheimer’s-related changes in personality and behavior, but they can learn to cope with them. We aren’t born knowing how to communicate with a person with dementia, but we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behaviour you may encounter as you care for a person with a dementing illness.
Tips for dealing with dementia care patients
- Get the person’s attention. Minimise distractions and noise, or move to quieter surroundings. Before speaking, make sure you have their attention. Address them by name, identify yourself by name and relation (if necessary), and use nonverbal cues and touch to help keep them focused. If they are seated, get down to their level and maintain eye contact.
- Set a positive mood for interaction. Your attitude and body language communicate your feelings and thoughts more strongly than your words do. Set a positive mood by speaking to your loved one in a respectful manner. Use facial expressions, tone of voice, and physical touch to help convey your message and show your feelings of affection.
- It’s not worth arguing with someone who has dementia. Because this progressive disease causes the brain to malfunction, when they say things that don’t make sense or are clearly untrue, they believe what they’re saying because it’s what their brain is telling them. It’s frustrating to hear things that aren’t true and instinctive to try to correct or remind, but you can’t argue with someone who doesn’t think logically or with reason – it will only lead to both of you arguing or getting upset. Don’t tell them they have said the same thing six times already. Either treat it as if you have heard it for the first time, or try to move the conversation onwards.
- State your message clearly. Use simple words and sentences, and ask simple, answerable questions (but not too many questions). Speak slowly, distinctly, and in a reassuring tone. Refrain from asking open-ended questions or giving too many choices. If they don’t understand the first time, use the same wording to repeat your message or question. If they still don’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns (he, she, they) or abbreviations. There are other ways to have conversations, like letting the person speak about what they would like to talk about…thus initiating the conversation.
- Listen with your ears, eyes, and heart, and respond with affection and reassurance. People with dementia often feel confused, anxious, and unsure of themselves. Be patient in waiting for your loved one’s reply. If they are struggling for an answer, it’s okay to suggest words. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support, and reassurance. Watch for nonverbal cues and body language, and respond appropriately.
- Choose your priorities and let the rest go. Because you care so much about this individual, you want to do as much as you can, as perfectly as you can. But holding yourself to those unrealistic expectations causes resentment, frustration and exhaustion. Instead, save your mental and physical health by picking your battles. Choose the top priorities and let the less important things go. Think about how important that thing will be in a week, month, or year.
- Break down activities into a series of steps. This makes many tasks much more manageable. You can encourage your loved one to do what they can, gently remind them of steps they tend to forget, and assist with steps they’re no longer able to accomplish on their own. Using visual cues, such as showing them with your hand where to place the cup in the saucer, can be very helpful.
“They lose the capacity to process, particularly new information. You can tell them things over and over, but they’re not retained. For example, I turn “simple tasks” into a song. There are examples and evidence that music bypasses the forgetting.” – Gina, Carer
- Use validation therapy or “therapeutic fibs” to respond kindly to their version of reality. Dementia care experts recommend joining your older adult in their reality rather than trying to force them back into ours. Trying to get them to understand facts or our reality usually causes confusion, anxiety, fear, and anger. Validating their reality and allowing them to express their thoughts helps them feel calmer and happier.
- Make time for yourself. Caregiving, especially dementia care, can be a lonely and exhausting job. When caring for someone, it’s instinctive to focus 100% on them…until you get burned out. But that’s not good for you or for them. It’s not realistic to take long holidays or hours for yourself each day, but short breaks can be quite effective. Doing something for yourself will help you recharge and reduce the risk of burnout. Have one or two trusted helpers who understand how to treat the person with dementia.
- Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 30 minutes ago, but they can clearly recall their lives 30 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s past – this information is more likely to be retained.
- Quality of life is still possible. It isn’t easy to cope with dementia, both for you and your loved one. But finding ways to enjoy life and having good quality of life is still possible. You don’t have to pretend that the challenges and pain don’t exist. Try to focus on the positives, no matter how small, and use humour whenever possible – people with dementia tend to retain their social skills and are usually delighted to laugh along with you.
- Have the tough conversations about medical decisions and choices. Taking care of important legal documents like a will, living will, or power of attorney is something that many people want to put off. But talking about end of life choices and getting the paperwork done before a health emergency saves you from making hard choices or running into legal problems in the middle of a crisis. Plus, many older adults have greater peace of mind when they know their wishes will be honored.
- Seek assistance. It can be difficult to request or accept help, but caregivers who have gotten help often wish they’d done it sooner. If you’re not sure where to start, call Alzheimer’s WA to find local services and support to assist with your dementia journey.
Caring for a person living with dementia: the lived experience
National Institute on Aging – Managing Personality and Behavior Changes in Alzheimer’s
Caregiver’s Guide to Understanding Dementia Behaviors
If a Loved One Has Dementia
12 Dementia Care Tips Caregivers Wish They’d Known Sooner