Dementia Care No Nos: What Not to Do in Alzheimer’s Caregiving

Dementia care is filled with twists and turns. It can take a lot of patience and creativity to navigate the changes and to adeptly manage dementia caregiving. Your knowledge of the person allows you to react and customize the care. However, there are some common strategies that work in dementia care.  Here we twist things around a bit by sharing with you some strategies that typically will not work, or cause you more difficulty as a caregiver…and how to turn them in to successful approaches. For additional ideas, we invite you to download our Dementia Care eBook.

When caring for someone with Alzheimer’s disease or another dementia don’t:

1. Focus on reality orientation and argue with the person when he/she is confused or upset about something that is not real. The best approach is working with the person from his/her reality and understanding that the feelings are real, even if the reality is different. The person may not need to get “home”, there may not be someone in her room, he may be upset over an imagined threat…but to the person the fear or anger is real.  The important thing is to acknowledge that feeling and help the person feel supported. Then, you can redirect or focus on doing an activity that is calming. Where reality orientation may be useful is in having prompts such as clocks, calendars, activity reminders, and signage (especially for early stage dementia).
2. Vary the routine or get drastically off schedule. Routine is vital for the person with dementia. While it is not always possible to have the same schedule every day, try to minimize disruptions and plan for changes. Don’t make unnecessary changes. Ensure meals, sleep and medications are kept as routine as possible.
3. Change medications without consulting a (dementia) specialist. A well-meaning family doctor or medical specialist (such as cardiologist or urologist) may prescribe something that can cause a lot of difficulty for an Alzheimer’s patient. If a doctor wants to prescribe a new medication (or suggests a new treatment, surgery or hospitalization), it may be wise to consult a geriatric pharmacist or neurologist. It is helpful to remain connected with the specialist or clinic who first assisted with a diagnosis or get a recommendation for someone who you can visit as the disease progresses and can consult on issues like these.
4. Make assumptions (or neglect to assess for changes).  Alzheimer’s is a progressive disease. Things will change. Your loved one might do fine right now cooking and maintaining the household, a simple calendar might allow Dad to keep track of appointments, driving locally may be okay and Mom might remember to take her medications as long as you set up the pill box. As abilities deteriorate, your loved one will need more support. It is vital to continually assess how well the person is functioning in different areas (or consider getting help from a geriatric care manager with periodic assessments and status visits). Most people in early stage dementia do not wander off or get lost…but then they do. Dad may be okay driving to his favorite places, until the day he takes a wrong turn. The results can be devastating.
5. Communicate the way you do with everyone else. You don’t need to be condescending or treat your caree like a child, but you do need to simplify the way you communicate.  Break down instructions in to steps. Check for understanding. Use eye contact and verbal clues. Check your own emotions before you interact (if you are upset or exhausted, you might be saying one thing but non-verbally communicating another, which the person with dementia can sense).