The ABCs of Dementia
Because I sell Medicare Supplement Insurance and Medicare Advantage Plans, I have many clients who are caring for their loved ones. Last week I attended a conference and the keynote speaker was Kristen Cusato, who shared her experiences with us about her mom who had Dementia.
Kristen is a celebrity in San Diego because she used to be a TV personality on KUSI. But when her mother was diagnosed with early onset dementia at age 61, she quit her job and moved to a different state so that she could help.
Her story touched me deeply as my own father has Parkinson’s disease, and has also recently been diagnosed with Alzheimer’s disease. Alzheimer's not only taking its toll on the person that has it, but it also takes its toll on the caregiver, and since my stepmother Jackie wasn’t at the event, I wanted to take good notes. When I was finished I thought that my clients might be interested as well, so I'm sharing it.
Below are the ABCs that we learned at the conference. This is for the caregiver, the family, and all of us who know someone with Dementia.
Remember, Medicare does not pay for Long Term Care so you will need to use your own resources to pay for care. There are many options out there, and I'll be writing about that later.
Thank you, Kristen Cusato, for putting this list of the ABCs of Dementia together! I’ve revised it somewhat with my own notes from the conference, but it’s basically from the handout that we received and gives very good advice.
A– Approach with a positive attitude, from the front with a smile, and address your person by name. Also, if possible, be in their line of vision and at their own eye level. This is because people with Dementia have can startle easily and some have hallucinations.
B– Breathe. Take a deep breath before the encounter or visit. They can read your essence and body language before they can comprehend what you are saying. If you have had a bad day at work, or have fought traffic to get there, be sure and wipe the stress from your face before you enter their room. Your stressful look may scare them.
C– Cue them. Instead of “Do you want to put on your sweater?” Put yours on first, and then offer to help with theirs. This way you are not telling them what to do, but letting them make the decision.
D– Dementia is the umbrella term. Alzheimer’s, Lewy Body, Vascular, & Frontal Temporal are types of Dementia. Alzheimer’s is the most common type and is diagnosed 70% of the time.
E– Every day is a new day. A bad day yesterday does not mean a bad day today. Take it one day at a time. If you got into an argument over something during your last visit, chances are your person won’t remember it today. You should try to forget it too.
F– Follow their lead. If they want to tell you the same story or wash the same dish over and over again, let them. If they aren’t hurting themselves, let them vacuum for 3 hours straight. If they get a sense of accomplishment, it’s not hurting anything to let them do it. Dementia patients feel a sense of calm with repetitive tasks. Don’t turn it into a fight. Bonus word: FORGIVE. If they want to do repetitive tasks, forgive them and let them. If they did something in the past that you are angry about, do your best to forgive them. They can’t make up for anything they did, or do, now.
G– Give them a purpose. Ask their advice or give them a task. Even if they do it wrong, they’ll feel worthy because they accomplished something.
H– Honor who they are and what they were. They are a person who had a good, productive life even though they might not be able to feed or dress anymore. We were told a story of a non-verbal man who was a doctor. His caregivers started each day by asking him a medical question. Even though he could not answer the question, his eyes lit up and he smiled.
I– Investigate. If they are agitated, they may not be able to tell you why. Are they hungry or thirsty? Tired? Do they need to go to the restroom? Be a detective and see if you can find out what is wrong.
J– Joy. Revel in the joyful moments you have with your person with dementia. Sing songs, tell them old jokes which they appreciated before. You will want some joyful memories to fill you up when your person and you are having a bad day.
K– Keep eye contact. It establishes trust and helps you make a connection.
L– Love. Give a lot of love to your person. It makes them feel safe and cared for.
M– Mistakes. You will make them. You will say and do the wrong things. Forgive yourself. Caregiving is a very tough job.
N– Never argue with a person with dementia. It agitates them (and you) and makes everything more difficult. If you find yourself arguing, look back to “M”.
O– Oxygen. Take your oxygen first. Like on an airplane… care for yourself. If you are not a strong, healthy caregiver, you cannot be strong for your loved one.
P– Practice Patience. It could take someone 20 seconds to understand your question and to come up with an answer. Their brains are different from this disease. Everything takes longer than it used to.
Q– Quiet. TV, radio, and several conversations at once make it difficult for the person to concentrate. Take them to a quiet place to visit or connect with them.
R– Redirect. If they are frustrated or upset, change the topic or environment, or suggest an activity they like to do or offer some tea or ice cream.
S– Simple. Keep sentences simple. Their brain processes differently and too many details will overwhelm them. For example, you can say, “Let’s go for a ride in the car”, instead of “Let’s get in the car so that we can go to the store and get our shopping done. After that, we’ll go get your hair cut and then we will go visit Aunt Mary”. Let them process one task at a time.
T– Talk about the old days and things from their past. As their short term memories go away, their long term memories remain. They might not remember who their grandchild is, but they might remember their 15th birthday party or who they went to the prom with.
U– Use “fillets”. The 80-year old says, “I have to pick my daughter up at school”. If you respond, “You are 80 years old and your daughter is not in school”, you may cause a fight. Instead, consider saying, “She called and has to stay late for soccer practice.”. Then re-direct by asking what she’ll be cooking her for dinner.
V– Validate their feelings and thoughts. Yes, it is Tuesday (even if it’s Friday) and we normally go to the park on Tuesday, but today we are doing a Friday activity which is (whatever it is). This goes along with not telling them that they are wrong.
W– Walk in their shoes. Just as you do not want them to be sick, they don’t want this disease. Realize that they are frustrated too because they can’t do things or remember things the way they used to.
X– Exercise! Go for a walk with your person with dementia. Or do chair exercises. Getting the blood flowing is good for everyone. Everything that you do for your heart is good for your brain.
Y– You are not alone. The Alzheimer’s Association has many resources for you, such as their 24-hour helpline (800-272-3900), support groups and caregiver’s courses. Reach out to them. That’s why they are there.
Zzzzs- Let them rest. This disease is exhausting for both of you. If someone wants to take a nap, let them. They are working a lot harder than we are doing ordinary tasks. You rest too.
For more information about Kristen Cusato, please visit her blog at http://www.kristencusato.com/