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The Stages of Alzheimer's Disease: Understanding Your Loved One

7/27/2010 5:26:54 PM

Coping with the responsibilities and challenges of caring for a loved one with Alzheimer's can be frustrating and confusing. Joanne Koening Coste, author of "Learning to Speak Alzheimer's" tells Homewatch CareGivers how understanding the stages of Alzheimer’s Disease through the eyes of a person who has been diagnosed can help family care givers to provide better care and to cope more effectively.

"Alzheimer’s disease will never take away a person’s dignity — only we can do that — so as care givers, let’s find ways to never let that happen”

Frequently, those living with – and caring for — an Alzheimer’s-affected adult feel overwhelmed by the symptoms of the disease. Your loved one's anxiety, agitation, wandering, paranoia and other Alzheimer's disease manifestations, coupled with difficulty initiating or completing tasks and problems with activities of daily living (bathing, dressing, eating and finding one's way — even in familiar territory) can leave a family care giver feeling in desperate need of relief. There will inevitably be times of thinking, "I simply can not do this for another day!" and other times of feeling, "This is the best thing I've ever done."

In order to make the triumphs outweigh the defeats, it may be necessary to walk in your loved one’s world often and with confidence. Learning why they behave as they do, and seeing the world through their eyes will help to make the joyful times more frequent. Understanding the needs and experience that arise throughout the disease stages, gives us the opportunity to focus on ways in which we can change our own behaviors, rather than trying to change the progressive symptoms of Alzheimer’s.

The Early Stage of Alzheimer's

During this stage, the person living with Alzheimer’s can function independently with guidance, cues and support, though internally they are feeling scared, vulnerable and struggling with low self-esteem. It becomes important to simplify and build trust; they need to know that we, the family care givers, will be here throughout the Alzheimer's symptoms.

If your loved one could express himself or herself easily, they would say, “Please don’t try to fill my brain with new ideas, equipment and data. My brain is full. There is no room to store new information, so I will therefore be unable to recall it later.” They would also ask, “Don’t question me about things I might have done or seen lately. I will not always remember, and asking me makes me more aware of my failure.”

We need to help our loved one maintain feelings of functionality by limiting choices and realizing decision-making is very difficult, because it makes them more aware of their losses. To help, offer a choice of only two simple items at a time — “Should we go to the movies or to the ballgame?” Now they feel included and that their opinion is valued, and they are able to choose between the two.

The Middle Stage of Alzheimer's

In the mid-stage, the person living with Alzheimer’s disease requires varying amounts of assistance with all activities of daily living. They need their family care givers to “Listen to the emotion behind my failing words.” What is their body language telling us? In this stage, your loved one will be quite adept at reading non-verbal language.

On an occasion when I was overly tired and overwhelmed, I rather angrily told my husband (who lived with Alzheimer’s disease) that I loved them, and he pointed at my eyes and sadly said, “Well they don’t!” My body had belied my words. What is our non-verbal language really saying? Are we confusing our loved one by saying “I love you” when our eyes are really saying, “I am so tired and scared?”

No matter where the person living with Alzheimer’s disease seems to be in the mid-stage, we need to be there with them — in their reality, not in ours. They may ask, “Where is my mother?” or state, “I need to go home now.” It behooves us to re-focus on something pleasant while simply saying, “We’ll see your mother later.” or “We’ll be going home soon.” Attempting to rationalize will only further confuse this person who is already living in a place that confounds them daily. Be creative and get into their world!

Keep the environment as simple and orderly as possible to help your loved one function at their highest level. Get rid of clutter and extraneous noises, like TV, radio, or several people talking at the same time. They are able to be at their best when your space is simplified.

The Final (End) Stage of Alzheimer's

In the final stage, your loved one is unable to care for himself or herself and requires palliative care. This is the stage where hospice care is most helpful and oftentimes necessary. The person with Alzheimer’s will likely spend most of their days in bed, quietly reliving pleasant memories. Soft background music, bird songs and other nature sounds, hand massages, and poetry reading may be the most positive choices for sharing this final chapter of their dementia.

The most important family care giver message throughout this disease process is to capitalize on strengths, instead of spending useless time fretting about how things ‘used to be.’ Remember that your loved one is still a functioning human being — a uniquely different one — who needs understanding and support when dealing with dementia. When they fretfully asks questions like, “What is wrong with me?” or makes statements similar to, “I think I am loosing my mind.” it is easiest and most effective to take their hand in yours and say, “This must be so scary for you. I am here.”

And remember, above all else, it is the Alzheimer's that makes them behave this way — it is nothing they is doing intentionally. Alzheimer’s disease will never take away a person’s dignity — only we can do that — so as family care givers, let’s find ways to never let that happen. Let’s find a way to see things through their eyes and love unconditionally.

For more information about Alzheimer’s and Dementia Care:

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