Caring for Individuals With Alzheimer ’s Disease
Judy Goreau, RN
In September I had the pleasure of attending a “Brainstorming” meeting with the North Florida Senior Citizens Network. This is a foundation entity of the Area Agency on Aging for North Florida, Inc. The meeting included people from all over North Florida involved in a variety of human services whose focus is on care for clients with dementia and their caregivers.
At this meeting, the group brainstormed ideas of how to provide care using a “person-centered approach” for newly diagnosed Alzheimers or other related dementias. Below are some of the issues discussed:
- The Dementia Action Alliance is a volunteer organization which focuses on changing how people view dementia.
- How the words and phrases we use impact the well-being and experiences of clients with dementia.
- The issue that behavioral health centers are not equipped to care for dementia clients.
- There is a lack of education in this field for first responders and medical health care centers.
- The need for a special phone line for counseling during a crisis that could be used by both the client and / or the care giver.
- The need for clients with dementia to interact with each other. The Orlando area has a program for this called Memories in the Making.
- The idea of providing a survey for newly diagnosed dementia clients to find out what they want, what they need and what is important to them.
It was interesting to learn that Australia has developed “Dementia Language Guidelines” which recommends words to use, words to avoid and the rationale behind it. In reviewing these recommendations, I realized the terminology applies to many of our clients at ACI, not just dementia clients. Some examples of recommended words are Care Partner, rather than Caretaker or Caregiver; Behavior Expression rather than Behavior Problem. Additional considerations are for care partners to NOT use phrases such as “I often forget where things are too” or “I can’t find my words either.” These comments are invalidating to the client. As one client relayed: “Don’t assume I can’t answer for myself.” “Don’t talk about me to someone else, in front of me.” “Don’t assume we can’t communicate even if we can’t speak.” “Don’t assume we don’t understand just because we are silent.” “Don’t assume because we can’t tell you, that your words or actions don’t hurt our feelings.”
I would like to share with you a few tips on caring for clients with dementia:
- Good communication helps modify behaviors and bad communication leads to bad behaviors.
- People with dementia communicate through emotion and behavior.
- Dementia clients are frightened all of the time.
- When speaking to a client with dementia, use short simple sentences.
- Reason and logic does not work.
- To prevent them from worrying, do not tell them about an upcoming event until the day of the event.
- Try to use Yes and No questions. They are only able to focus on one thought at a time.
- Do not interrupt them when they are speaking.
- Always approach the client from the front. If they are standing, you stand. If they are sitting, you sit.
- Limit background distractions.
Lastly, I want to share a poem written by Owen Darnell, “Do Not Ask Me To Remember.”
Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you are with me,
Kiss my cheek and hold my hand.
I’m confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try.
Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me ‘til my life is done.
The North Florida Sr. Citizens Network plans to continue meeting. The group wants to establish program goals, create focus groups with newly diagnosed dementia clients, review grant opportunities, and establish an administrative structure and a Mission Statement. If you would like more information about this group, contact Lisa Bretz at firstname.lastname@example.org