How to write a personalized care plan for your loved one with dementia

Written by Amanda Thornton RN, BSN, MSN, CIC, VA-BC

One of the biggest frustrations for me as a caregiver to my mom is the inability to “get her to do what I want her to do when I want her to do it”. Honestly, we but heads ALL the time. “Mom, why don’t you brush your teeth?” . “WHAT?! What are you saying? That I have BAD BREATH!??” she yells back at me. “Well……um, yes. I am saying that”, I reply. To which she huffs away in anger and offense with her hands on her hips, then comes back minutes later having completely forgotten the interaction and we start it all over again in an almost comical cycle. And never-mind asking her to actually take a bath, this is a battle of epic proportions!

If you can relate to this situation, you understand that the “daily grind” of normal activities of daily living can become huge problems as dementia progresses, with the person refusing, or even becoming combative when you as the caregiver attempt to do something as simple as getting them to wash their face, or washing their face for them. And yet your frustration rises because you know they need to do these things to remain healthy, plus it’s embarrassing when they go anywhere and they stink to high heaven. So what can you do? There really is a pretty simple solution to this, and it is to write a care-plan. A care plan is simply a guide and a routine you can follow which greatly helps your loved one with dementia be more compliant and likely to do what you want them to do- no butting heads necessary!

Care plans are at the CORE of everything a nurse does with a patient. They are so important that they are looked at, reviewed, changed and checked off by every nurse everyday! Nurses spend a LOT of time doing this, and for good reason. You cannot approach caring for a patient without a personalized plan of care. Why? Let me give you an example.

I had an alert and oriented patient (no dementia) who came in and we put her on “routine” bathing for 8 am each day, as well as routine meal schedule and am-therapies before we had a chance to really develop a personalized careplan for her. We soon ran into a problem however, the patient was being VERY difficult in the morning, making life hell for the nursing staff, refusing things, throwing things, yelling at people, etc. even at times pretending she was “dead” (this really was quite funny at times). What in the world was going on here? Why was she doing this? Well, a personalized careplan includes figuring out a patients preferences, including when they were used to doing things at home. After a gentle questioning, we found out that she normally went to bed around 1 am, and rose every day around 11 am. She was NOT a morning person. So much so in fact that she flat out refused to do anything at all the entire day because she was so pissed off having to get up early! After we realized this, we made a careplan for her that included bathing in the evening, and therapies in the late afternoon. No breakfast was served to her, she had lunch and dinner and a late night snack scheduled. A sign was posted on her door to “keep quiet no visitors until after 11 am” (including the doctors!). All her medications were scheduled for later in the day. And guess what happened? It worked PERFECTLY. She suddenly became a model patient, the sweetest little lady you ever met, and the nurses all loved her and fought over who got assigned to her that day! By simply doing things the way she was used to, and scheduling her day the way it made sense FOR HER, it changed everything.

This is such a simple thing to do with a person living with dementia, but we often forget this. When I am with my mom and I am “pressing her” to go take a bath first thing in the morning, she inevitably refuses. After I thought this through for a bit, I remembered that when I was a child, her routine was to take a nice long bath late in the evening, as a way to wind down before bed. She would get a cup of tea and soak while reading a book, sometimes for a full hour! “DUH”!! I said!! Here I am, a nurse, knowing all I know about the importance of personalized careplans and I totally am not applying it in this situation with my mom. So where do you start? What do you do?

First and foremost, take into account all of your loved ones personal preferences, likes, dislikes, and historical routines. You will apply this to EVERY part of the plan! THIS IS KEY.

A careplan can be as detailed or as bare-bones as you want it to be. It includes all of the necessary tasks of daily living including eating, bathing, dressing, sleeping, therapies, free time activities and medication administration. Depending on the level of dementia, the person can participate in making the plan with you. Then you can write it out in simple language for them and post it in strategic places. For example, meal time care plan is posted on the refrigerator. Bathing careplan is posted on the mirror in the bathroom. Then, when they begin to argue or refuse you can show them the careplan they came up with and agreed to! This does help!

Our Mom is not too far gone to know what is going on, so her participation in the careplanning process is good and helps her maintain a sense of independence and control over what happens day to day.

This is an example of her careplan:

Morning:

1. Sleep until 9 am

2. Get dressed (don’t forget clean underwear!, brush teeth, use deodorant and wash face before going downstairs

3. Take morning medication (list out meds here)

4. Let the dogs outside

5. Make breakfast and eat

6. Feed the dogs

7. Wash the dishes

8. Watch the news for an hour (Remember to watch Church on Sundays instead!)

9. Play the harpsichord for half hour

Afternoon:

1. Lunch at noon

2. Wash the dishes

3. Light cleaning (sweep/vacuum/dust)

4. Take a walk with Dad to go get the mail

5. Afternoon Coffee

6. Laundry folding (Monday and Friday only)

7. Afternoon rest time from 3-4:30 pm, OR pick a Hallmark movie

Evening:

1. Meal prep for dinner

2. Dinner at 6 pm

3. Wash the dishes

4. Feed the dogs dinner

5. Watch the evening news

6. Play evening harpsichord for half hour

7. Bathing days are Tuesday and Saturday- on these days go upstairs by no later than 7:30 pm to do a bath. Remember to wash the hair!

8. Take evening medications (list out meds here)

9. Bed by 9:30 pm

A nursing careplan in a hospital is actually much more involved, detailed and complicated and includes things that the nurse does also, such as “Speak slowly and clearly to the patient, offer choices, redirect when agitated, approach the patient from the front, use non-threatening slow gestures, remind patient to use the walker, ensure good lighting when patient awake, ensure hearing aids are in, re-orient the patient to place and time frequently, crush medications and put in applesauce or pudding, reduce stimulus by placing in a quiet area, monitor hydration intake and encourage fluids, etc. and so on. The intervention options are endless depending on the situation. If you want to add that to your careplan (things you as the caregiver should also be doing) this is certainly a good idea and can help a great deal!

The point of all this? Do not underestimate the power of a organizing the day by using a personalized careplan for your loved one, and getting them to agree to it. Honestly it makes life a lot easier!! Try it!

References:

1. How to write a careplan; the Alzheimer’s association: https://www.alz.org/help-support/caregiving/daily-care/daily-care-plan