Living with Alzheimer's Disease

If you have been reading my posts you are aware that AltaGolden works quite a bit with people with Alzheimer's and other forms of dementia.  Over the next few posts I would like to share with you information about dementia, what it is like to experience this condition, what the family and caregivers live with, techniques for working with someone with dementia, and what is happening in dementia research.  Much of the information that I will share is based on my experience within an agency that works daily with dementia--both with in-home clients and at the Adult Day Program.

Today's topic is about what it is like to live with dementia.

One of the things that I have experienced is that dementia tends to magnify base personality characteristics.  If someone is stubborn and intractable this behavior can become worse.  If they are sweet and loving this can also be magnified.

We had a client in the Day Program a couple of years ago who was very sweet and used to tell everyone she met that she loved them and give them a kiss on the cheek.  It was a delight to see her every day because we were guaranteed to get a smile, a kiss, and a kind word.  At one point her husband asked me to try to get her to stop telling everyone she loved them because there were no boundaries as to where she would share this sentiment.  I didn't have the heart to curb her kindness.

Disorientation and anxiety are very common.  Even if the person is not told they have dementia, they do recognize on some level that things are not as they were and this can create agitation.  They also may not recognize their own home environment. They are not able to track their own schedule and activities, orient to the time of day, or even know if the fading light is related to morning or evening. You may have heard the term "sundowning".  As the daylight fades, confusion can set in and increase agitation.  It is not uncommon for us to have clients in the Day Program get fixated on the windows as the sun starts to go down--especially in winter when the sun sets at 4pm.  We end up having to close the blinds and face their chairs away from the windows to distract them and keep them involved in the activity at hand.

One of our Day Program clients has begun having episodes where he lives his life in past events and locations.  He may be at the AltaGolden Center or at his apartment but he thinks he is at a university or prior workplace.  We have another client who has become so comfortable at the Center that, when she leaves at the end of the day, she wants to lock the door to her "house" and doesn't understand why she is leaving.

What is very common is that basic daily tasks become very difficult to perform without one-on-one assistance.  Making a sandwich, doing the laundry, and cleaning the house become insurmountable without step-by-step guidance.  In the picture above, we took small balloons and wrapped them with yarn dipped in a glue made of flour and water.  The concept of taking this yarn and wrapping it around the balloon was very difficult and required a lot of guidance.  Everyone created a balloon although some of the balloons were collaborations between two clients or between a client and staff member.  In some cases we had to guide their hands over the balloon with the yarn.  Tomorrow I'll post a photo of the end result of their project--an Easter egg wreath made from their yarn eggs.

In all cases where we have supported in-home clients with dementia, the ability to prepare a simple meal or perform basic tasks becomes impossible because they can't remember the steps. The idea of taking two pieces of bread and adding meat, cheese, or condiments is incomprehensible.  Working a stove or microwave, preparing a meal, cleaning dishes, or self-administering medications become an impossibility.  Bathroom reminders are often needed--sometimes because the individual doesn't understand what that feeling of pressure in the bladder or bowel means. 

The caregivers, whether family or service-based, have a huge challenge in providing support.  In the beginning just a little help can go a long way.  Eventually 24-hour care is required.  In my next blog I'll continue the discussion with what the caregiver experiences and why it is so important to get a support system in place.

In the meantime, visit us at www.altagolden.com for more information and resources.

Take care and have a blessed rest of your day!  Laura Barish, AltaGolden