One of the most significant challenges caregivers face is not knowing how much assistance to give or when to give it. The person with early-onset Alzheimer’s disease is still primarily independent. They are capable of dressing, bathing, walking, and may still drive. Knowing when to step in and help takes time. Eventually, finding a balance between independence and interdependence can be done.
The following tips were provided by caregivers who have experienced caring for a person living with early-onset Alzheimer’s. They can help you deliver the most helpful support to your loved one. They are provided courtesy of the Alzheimer’s Association.
Tips for Early-Onset Alzheimer’s Caregivers
- Safety first: Is there an immediate safety risk for the person with dementia to perform this task alone? If there is no immediate risk of injury or harm, provide encouragement and continue to provide supervision as necessary.
- Avoid stress: Prioritize tasks or actions that do not cause unnecessary stress for the person with dementia. For example, if you know that grocery shopping will be frustrating for the person with dementia, ask for their participation to outline a weekly menu and organize a grocery list.
- Make a positive assumption: Assume that the person with dementia is capable of completing the task. If you sense frustration, try to identify the cause of the frustration before intervening. Focus on his or her current needs, rather than dwelling on the future.
- Create a help signal: Identify a cue or phrase that you can use to confirm if the person with dementia is comfortable receiving support. For example, you may agree to use a phrase like, “Is there anything I can do to help?” or a nod to signal that it’s ok to chime in if the person with dementia is having difficulty remembering a word or name.
- Talk it over: The best way to determine how and when to provide support is to ask directly. Ask the person with dementia what they need or the frustrations they may be experiencing. Talk about it, then make a plan.
- Work better together: Find activities to do together and keep the conversation going about expectations for how you will provide support. Check in regularly by asking the person with dementia if you are providing a level of assistance that is comfortable or adequate.
Suggestions from People Living With Alzheimer’s Disease
Learning about the experiences of people living with Alzheimer’s disease can be helpful to those who support them. The following are some suggestions from people with the disease from Memory Problems? written by the Early Stage Support Groups in the North/Central Okanagan Region of the Alzheimer Society of B.C.:
- “Please don’t correct me. I know better—the information just isn’t available to me at that moment.”
- “Remember, my feelings are intact and get hurt easily.”
- “I usually know when the wrong word comes out and I’m as surprised as you are.”
- “I need people to speak a little slower on the telephone.”
- “Try to ignore off-hand remarks that I wouldn’t have made in the past. If you focus on it, it won’t prevent it from happening again. It just makes me feel worse.”
- “I may say something that is real to me but may not be factual. I am not lying, even if the information is not correct. Don’t argue; it won’t solve anything.”
- “If I put my clothes on the chair or the floor, it may be because I can’t find them in the closet.”
- “If you can tell that I am having trouble, please don’t draw attention to it. Try to carefully help me through it so nobody else will be aware of the problem.”
- “At a large gathering, please keep an eye on me because I can get lost easily! But please don’t shadow my every move. Use gentle respect to guide me.”
- “Sometimes I sense that you think I am faking these problems. What you don’t see is my terrible confusion and my hurt knowing how you feel.”
- “I don’t mean to frustrate you. I know you get impatient and tired of telling me things three times in a row. Please be patient.”
- “Ask me what I think or want. Don’t assume that you know.”
- “Believe I still love you, even if I am having trouble showing it.”
HomeChoice Can Lend a Hand
HomeChoice Home Care Solutions is experienced in helping families with a loved one who has early-onset Alzheimer’s disease. If you live in the Raleigh, Durham, and Cary area, call us or fill out our contact form to schedule a free in-home care assessment. We’re here to help!