Helping Dementia Patients Find and Save Their Stories

Two nights ago I attended a seminar called Dementia 101. Presented by the local Alzheimer's Society, this night was an eye opener for me. I could personally relate to symptoms and behaviours since my grandmother suffered from Alzheimer's. I recalled aspects about her, her care facility and those around her while I listened. To this day my mom wishes we had thought to film her talking about her past before she lost all capability of speech and recognition her loved ones.

So I'd like to pass on a little of what I learned. Most applicable to personal historians is how to interact with those who have dementia - especially Alzheimer's Disease.

Here are the "DON'T'S"

- do not reason and argue

- do not ask them to reason or problem-solve

- do not demand that they get the facts straight

- do not correct their ideas

- do not reorient them (difficult in an interview when you want to stay on track!)

- do not think they are being uncooperative on purpose

-do not think that they really do remember, but are pretending not to

-do not use a "bossy" attitude in care

- do not act with impatience

- do not use left, right, up, down, but rather say 'down by that yellow pot' or 'by the other hand' or 'on the other side' etc.

Many "DON'T's" on the list are self explanatory but I found when trying to interview that it is helpful to have a family member do mild prompting about certain stories they know (be aware of over-interrupting though). I also discovered that their surroundings can really affect how they feel. Clutter is upsetting, noise is distracting, TV can be a big no no since they cannot process story lines that keep getting interrupted with commercials. Some cannot determine that the tv is not actually happening in the room with them so watching the News or Crime/Cop shows can be hugely upsetting.

Some can lose depth perception as well so if the floor surface changes colour it may seem like they are standing on the edge of a cliff and cannot move forward. Patterns and pathways on floors help tremendously. 

So now let's look at some "DO's":

- Validate, Reassure, Distract (so hear them and achknowledge their feelings, tell them it'll be ok and you'll take care of it, and when appropriate, move on)

- enter into their frame of reality or their "world"

- be aware of their mood or state of mind

- use few words and simple phrases and then stop talking and wait. 

- OR use no words, just friendly gestures and simple motions - perhaps looking through a photo album together will help start them talking

(Here's my favourite video of the power of music to get a senior with dementia talking. Bringing them out of their apathetic state can really help your interview!) http://www.youtube.com/watch?v=QG7X-cy9iqA

- do everything slowly

- approach from the front (peripheral vision diminishes as well and they develop more of a tunnel vision so squat down if you need to be right in front of them)

-constantly reassure them that everything is OK

- keep people with dementia comfortable "in the moment" - every moment

- maximize use of their remaining abilities

- limit tv or radio which they can feel are frighteningly real

- maintain privacy - see them and not the disease. You would want to be treated with dignity too.

- provide a safe physical environment

- raise their self-esteem at any opportunity but don't treat them like a child.

Now most pertinent to us personal historians working with clients  experienceing dementia. What are our language needs when interviewing?

- body language and your tone of voice are more important than your words. (I have to make sure I have a pleasant look on my face so as not to concern them. Sometimes I might look too concerned or my interest level keeps my brows furrowed!)

- give visual cue at the same time as verbal cue

- use short words

- use clear and simple sentences, pause, next sentence etc

- questions should ask for a "yes" or "no" answer. (tough when you are interviewing so plan ahead of time if you can)

- talk about one thing at a time

- talk about concrete things; not abstract ideas

- use common phrases

- always say what you are doing ("I'm just getting up to adjust the microphone, camera etc")

- if they repeat their question, repeat your answer as you did   the first time

- give them a longer time to process information

- wait patiently for a response

- be accepting of inappropriate answers and nonsense words

- speak softly, soothingly and gently

I know for myself that these tips would have greatly helped us understand my grandmother, and my current client. I really needed to slow down, have photos and favourite old music handy and stay on topic with her rather than fill the silence with more questions. A lot of prep work may be necessary and try to find out from family members when is their best time of day to chat.

If the family member interrupts frequently, have a 'tips' sheet made from this article printed out beforehand on how they can help while you interview. As I said, I didn't know many of these things when my grandmother was alive with AD so don't assume they know either. I noticed jumping from one memory to another was tiring for this client.

Most  importantly, we need to change OUR behaviour to adapt to the dementia because the person with the disease cannot.

Hope this helps! Feel free to share your comments and experiences so we can continue learning! After all, in the U.S. alone, 42 people are being diagnosed per hour with dementia. I believe it may be 7 people per minute worldwide.

Thanks to the Alzheimer's Society of Cambridge for many of these helpful tips.