I wrote this for individuals who provide Alzheimer’s Respite Care but these are good tips for anyone providing dementia care.

Tips for Providing Alzheimer’s Respite Care:

The purpose of providing care to individuals who suffer from Alzheimer’s or other dementia related conditions is to preserve or retain their skills for as long as possible, foster their sense of independence, all while retaining their sense of dignity and self-esteem. We are there to help them and in so doing we should remember the words of Paster George MacDonald:

"Meddlesomeness is the very opposite of helpfulness, for  it consists of forcing yourself into another as opposed  to opening yourself as a refuge to the other. " 

So here are some tips on how to communicate and otherwise interact with those individuals who just happen to have Alzheimer’s or other forms of dementia (Click on each section heading below to read more):

1. Treat them like adults.

2. Keep it simple.

3. Keep it precise.

4. Repeat as Necessary.

5. Prompt them. Don't correct or remind them.

6. Redirect them. Don't correct them.

7. Never issue orders or ultimatums.

8. Avoid asking them to do things.

9. Keep it positive.

10. Communicate in a therapeutic way - not a manipulative one.

11. Avoid institutional lingo.

12. Remember they are there/present.

13. HELP them - don't DO FOR them.

14. Never take it personally.

15. Be yourself!

1). Treat them like adults.

I cannot over emphasize this point. There is a tendency for those of us who nurture or who give care to often treat those who are sick, disabled, or otherwise infirm as if they were children. We use voices that are not normal conversational tones, but instead end in the higher pitched tone often used on babies or children. For an adult this is degrading and demoralizing. The best way to avoid this is to remind ourselves these individuals are adults just like us who just happen to have problems remembering things and treat them as we like to be treated when interacting. Remember, treating someone like a child when they are adults is harmful and destructive to their emotional well being.

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2.) Keep it simple.

Even though they are adults they DO have difficulty remembering things and processing information. Bearing this in mind when socializing and especially when imparting information keep your sentences simple and to the point. An example: Instead of saying, “It’s 12:00 and time for lunch.” You might say, “It’s lunch time.”

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3.) Keep it precise.

Avoid imparting information in a way that might not be clear to the unfamiliar. An example, instead of saying, “It’s time for Memory Matters!” say, “We’re going to do a fun crossword now.” After all, participants may not know or remember what Memory Matters are and even after you explain it they might forget by the next week.

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4.) Repeat as necessary.

No matter how many times they may ask the same question answer it every time as if it were the first time they asked. Because in THEIR minds it is. “What’s your name?” “What time is my wife coming to pick me up?” “When are we playing Bingo?” Never get frustrated. Never forget they forget. “My name is Heather.” “Pam is coming at 1:30 today.” “Bingo is at 12:30.” Never try to REMIND them. They won’t remember just because you do so but they will get upset at being told they forgot something. It will scare them! Just answer the question as if you’ve never been asked before.

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5.) Prompt them. Don’t remind or correct them.

Reminding them or correcting them will scare them! It will remind them of their failing abilities and memories. When doing activities it’s best to remember it need not be “right” or “perfect” or even “complete” so much as it’s ENJOYABLE. So when doing activities and you notice an incorrect answer or incomplete portion decide if it’s really necessary to “fix” it. If so, DO NOT remind or correct. An example of what to say, “Do you think this puzzle piece might go here? I’m not sure.” or, “Do you think a green color might work on this part of the picture?” as opposed to, “You forgot this piece of the puzzle. It goes here.” or, “It’s grass so you should put green there not blue.” This includes behavioral issues as well. If you’re doing an activity and they start to wander off or do other things try to prompt them to return to said activity. “Yes, I want to sing too. But let’s finish this crossword first and we can sing later.” “I’m curious what’s down the hall too but let’s eat lunch first and check it out later.” Odds are they’ll listen and forget about the singing or exploring (at least temporarily).

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6.) Redirect them. Don’t correct them.

Sometimes prompting like that doesn’t work. Again, you don’t want to correct your participant when they aren’t participating or behaving acceptably. If prompting doesn’t work, completely redirect their focus and attention if possible by changing to a new activity. If that doesn’t work change the environment. Go to the couch for a chat or go ahead and take them for a walk (especially if these are things they are wanting to do in the first place!). Sometimes it’s not the activity or environment. If it seems they just don’t want to be around you for whatever reason, swap with another Friend (so long as their Participant is okay with it). This is called “change of face.” In summary, should they be doing something inappropriate during an activity and continual prompts don’t work, remove them from that activity and find them something else to do; if that doesn’t work, change the environment they’re in; or if that doesn’t work, change the Friend. These types of behaviors are symptoms that must be managed and the best management is redirection: a new activity, environment, or “face.”

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7.) Never issue orders or ultimatums.

Don’t be bossy! Again, these are adults with free will. If they don’t want to do something in the program it’s their right to refuse and not participate. Never say, “Well we HAVE to.” or “But you have to eat/go to the bathroom/do this project...” No, they don’t. Trying to force a person (especially an adult) to do something against their will when no imminent threat to their or someone else’s safety is involved is abuse no matter how well-intentioned we are.

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8.) Avoid asking them to do things.

On the other hand, you don’t want to ask them if they want to do things all the time either. “It’s lunch time, do you want to eat?” Very often you’ll get a “No.” To avoid this say things like, “It’s lunchtime.” This is neither an order or an open ended question. They will know and understand it’s time to get together for lunch however, they know they will have the CHOICE to actually eat once they sit down with their Friend and their lunch.

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9.) Keep it positive.

Those with Alzheimer’s or other dementias are scared. They often know they are losing their memory and abilities and this invokes a lot of fear which often expresses itself with a refusal to do things which can lead to frustration or even hostility. To avoid this make sure you reassure them that it will be okay. For instance, “We’re going to do a FUN crossword now.” Or, “It’s Bingo Time. I’m excited!” By doing this you’re reassuring them it will not only be okay, but enjoyable should they choose to participate.

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10.) Communicate in a therapeutic way - not in a manipulative one.

Caregivers sometimes use manipulation to get their loved ones to “behave” the way they want them to in a way that avoids confrontation or conflict. I’ve seen this tactic used repeatedly, much more so than ordering or correcting. However, this is NOT healthy for either party. There is a way to encourage positive behavior that doesn’t resort to manipulation. The thing to remember is that if someone doesn’t want to do something it’s their RIGHT to say no guilt free. It’s one thing to appeal to a person’s need and desire to feel independent with useful skills, etc.. It’s another to coerce them emotionally.

Here’s the difference, e.g., if your participant initially refuses to participate in an art project or if you want them to take a trip to the bathroom and they refuse it’s perfectly acceptable to try to appeal to their need to feel needed and useful: “Well, can you sit with me and watch me to make sure I’m doing this project right?” or, “Well can you come with me to the bathroom anyway in case I get lost?” Odds are they will say yes because everyone wants to feel helpful and useful. It’s a positive request with a positive result should they end up “helping.” Also, it gives them the chance to say no without feeling guilty. “Well I don’t think I can help you with that project.” or “I might get us just as lost.” They will ultimately feel better about themselves with whatever answer they give you because they feel in control. On the other hand, you’ll want to avoid inducing guilt by saying things like, “But if we don’t do this project the little kids at the hospital won’t have as many book marks.” or, “But if you don’t come to the bathroom with me I might get lost.” This is a no-no. Guilt breeds resentment.

Guilt used this way is actually emotional coercion. No one ever feels good about themselves if they feel they have to do something out of guilt. Think of your most meddlesome relative, “You never call!” Yeah, that really makes you want to call them now, right? And if this works and you do call more often the calls feel like a chore or duty and cannot be enjoyed as much. This is because doing things out of guilt does not bring joy or satisfaction, it merely eases our conscience and makes those things a chore for us. So it is with our participants. So if you have a participant who doesn’t want to eat lunch, never resort to something like, “But your daughter made the chicken salad from scratch just for you.” Oh, they may eat it, but they won’t enjoy it and they’ll end up resenting both you and their daughter. Appeal to their need for independence, feeling useful, and social.

NEVER try to appeal to their conscience. Guilt is never an adequate replacement for doing something out of a sincere desire or need. Frankly put, using guilt to coerce someone to behave the way we want them to is considered emotional abuse defined as “covert aggression” by both psychologists and psychiatrists. So when trying to motivate your participant be motivational (appeal to their desire to feel helpful and purposeful) as opposed to being manipulative. In other words, give them the right to say no to you guilt free.

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11.) Avoid institutional lingo.

Whether you’re talking directly with them or to others in their presence, avoid using “institutional lingo.” It’s not, “Time for Memory Matters!” it’s “Time to play a new and fun game.” It’s not, “Music Time!” it’s “Barbara is going to play piano for us now. I’m going to enjoy this!” It’s not, “Arts and crafts time.” it’s “We’re going to work on XYZ project now for the kid’s at ABC hospital. This will be great!” It’s not, “Time for a potty break/time to go the bathroom/do you need to go to the bathroom?” it’s “I need to go to the restroom. Do you want to go along?” Participants should not feel like they’re in school, a nursing home, or hospital. Just keep that in mind when communicating with them. It’s a SOCIAL setting, not a medical one. That being said avoid any discussion in front of them or with them about dementia or Alzheimer’s.

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12.) Remember they are THERE/PRESENT.

Even if they lapse into silence and aren’t communicating and seem to have “wandered off” mentally, remember they are still present. Never talk in front of them as if they aren’t there and certainly don’t talk about them with someone else as if they aren’t there. This dismisses their existence and is horribly demeaning to them.

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13.) HELP them don’t DO FOR them.

It’s often tempting to actually DO projects or activities for those we care for in order to “protect” them from frustration or disappointment or in order to save time. In this setting that is inappropriate and defeats the purpose of the program. The difference in “helping” versus “doing for” someone is that they are still the one who ultimately completes any given task. Helping them while letting them actually DO tasks will guarantee they will feel a sense of accomplishment and help them retain their skills. DOING something FOR them will do the opposite. Constantly doing something for someone is harmful to their self-esteem, may result in an acceleration in skill loss which causes a more rapid progression of the disease, and is just plain old meddlesome - not helpful.

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14.) Never take it personally.

No matter if they get mad at you, don’t like you, or simply don’t want to do something that day, never let it hurt your feelings or make you mad. It’s not personal for them. There are many reasons someone may seem mad at you or not like you or simply don’t want to participate in things that day. But ultimately it’s not about YOU. It’s the dementia. If someone is hostile that day consider a “change of face” by swapping places with another friend. If they don’t want to do a particular activity (even if it’s one YOU really want to do), go sit on the couch with them and chat and enjoy a cup of coffee until it’s time for the next activity. Remember they have a disease and how they act are symptoms of it not personal attacks.

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15.) Finally, be yourself!

Relax and have fun! Initiate and guide conversation and provide assistance in activities when necessary, respecting your Participant as an adult human being with the need for respect and dignity. Make it your goal to be a real Friend to your Participant and you will be a blessing and be blessed in return!

God bless you!

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