When I first start talking with families about a loved one who’s showing signs of dementia, they often are very concerned about what type of dementia their loved one might be developing. Sometimes families will put a great deal of time and money into trying to identify exactly which form of dementia they are facing. My first question to them is always, why do you need to know?
I think we believe we need a specific diagnosis because we are mistaking the condition of dementia for a disease. It’s important, however, that we understand when diagnosis is needed and helpful, and when it diverts our attention and efforts from what’s far more valuable: learning how to provide care.
When someone is diagnosed with a disease, we should know exactly how the disease is progressing so we can make educated and appropriate decisions regarding treatment. If I were to learn that I was developing cancer, I would want to know what type, how far it had progressed, exactly where it was growing, and all of my treatment options in detail. I would need all that information to make a wise decision about which treatments to pursue.
The goal with diagnosis is to isolate the best treatment. But with dementia, we don’t have treatments or cures (yet). Once we know dementia is present, it’s time to focus on learning how to maximize quality of life for the person and his or her family and caregivers.
Here at DAWN, our dementia clients have come to us with a variety of dementia diagnoses. Of course, the most prevalent has been the dementia that results from Alzheimer’s Disease, but we also have seen vascular, mixed, frontal lobe, normal pressure hydrocephalus, Parkinson’s, Korsakoff syndrome and dementia that follows earlier traumatic brain injuries. Regardless of the type of dementia, however, we find that the DAWN Method helps us and their families provide care.
My goal has always been to help my neighbors (who became my clients) find ways to continue living at home with as much enjoyment and fulfilment as possible. When I turned to books on dementia and dementia care, I found a lot of supportive advice and commiseration – and the belief that dementia-related behaviors were unavoidable and inexplicable. It sounded like using drugs and locked doors were the only recourse, but I still wanted to find a way to make life better for these people I’d grown to love.
So, although the way they acted seemed random and unpredictable at first, I stayed focused on their emotional distress. Emotions cause our actions and reactions; if I could find a pattern of emotional needs, I knew I could help my clients feel more comfortable. What I found were three specific security needs and four well-being needs. The DAWN Method teaches families to recognize and meet these needs.
Once I began responding to my clients’ emotional needs, I began to see their abilities and disabilities in patterns also. It didn’t matter whether they had dementia due to Parkinson’s or an earlier head injury or Alzheimer’s, they were losing rational thought but not intuitive thought, and the remembering self but not the experiential self.
When we are responding to a condition, we need to provide care. Conditions are something we must learn to live with. Care supports the whole person, not just physical health.
Without warning, you might find yourself standing in the shower with the shampoo in your hand, drawing a blank about what to do with it. Or, you might find yourself halfway through making coffee one morning with no idea how to add water to your coffeemaker.
To find yourself suddenly unable to do something simple is terrifying. If you realize that you are becoming increasingly impaired, you know that depending on others to provide for your every need is coming. You know you’ll become more and more of a burden and you also know you will have to trust those who love you to keep you safe and comfortable.
How can we, as families and caregivers, help our loved ones come to trust us – even though they are becoming increasingly less able to make sense out of what we are asking them to do?
Help them feel safe being confused.
One of the surest ways to help people who are losing memory and rational thought feel safe is to make sure that whenever they are with you, they can ask for information as often as they need it without upsetting you. If you are never alarmed or irritated when they display that they do not understand or cannot recall, they will at first feel safe asking, then eventually feel safe not asking. They will begin to trust you to keep track of what’s going on even though they can’t.
For someone experiencing dementia, becoming increasingly confused is unavoidable. As their companions, we do them a great kindness when we help them become comfortable with it.
Help them feel safe when doing tasks.
Whether people with dementia are with their family members, friends or paid caregivers, there are always things that need to be done. Even if they are simply getting ready to go for a walk, a few preparations must be made. Although it may be obvious to us that appropriate shoes are necessary, it won’t be apparent to someone without memory or rational thought.
If I want my loved one to feel safe being in my care – and be comfortable with the constraints dementia creates – I will have to become an easygoing and nonjudgmental partner in accomplishing what needs to be done each day. If my responses are concern or irritation when my loved one doesn’t understand what should happen next, I am putting myself in a position of superiority and we will have problems.
My role as someone spending time with a person with dementia is that of a teammate – a fellow traveler on the road of forgetfulness and finder of ways to enjoy the world intuitively. If I am there as a companion rather than a superior, we will have a pleasant time together.
Help them feel safe about memories.
With memory loss comes an altered sense of reality – both about the past and the present. If I accept the inaccuracies that result with memory loss and work with them, rather than demanding that my loved ones or clients to use the memory and rational thought skills no longer available to them, they will again begin to feel safe with me.
People with dementia learn either that they are safe in our care or not through their day-to-day experiences with us. It’s up to us to use our rational thought skills to help them become more comfortable as their condition progresses.
When we are with people who have dementia, we should take responsibility for their moods. Actually, whether we realize it or not, we are already creating their moods because changing moods requires rational thought and memory. People with dementia are missing both.
Think about how you manage your own moods. If you are feeling sad, you might use memory to recall happier times. If you are feeling frustrated or insulted by someone’s behavior, you might draw to mind reasons for why they behaved that way or analyze why you should be patient with them. You could plan to give yourself a treat later or distract yourself with thoughts of an upcoming vacation.
People with dementia don’t have these tools at their disposal. As a result, negative moods from failure at tasks or embarrassment in conversations are predominant and persistent. Studies have shown that moods last longer for people with dementia and that the further into dementia the person is, the longer the moods last.
There’s another complication. With intuitive thought, people with dementia continue to be able to read the moods and feelings of those around them. Yet, without rational thought they are unable to analyze why their companions might be experiencing negative moods or feelings.
One of our clients, Mary, had two DAWN caregivers in her life as well as a daughter who lived nearby. All three women were kind, empathetic and very much attached to Mary. One day, one caregiver called me saying that our client was having trouble with back pain and needed an overnight caregiver. Lately, Mary had been complaining of pain almost every time this caregiver was with her and, when this caregiver prepared to leave, Mary became more anxious and begged her to stay. I told the caregiver that I would begin a review of our care plan.
When I spoke with Mary’s daughter, she was mystified. I checked with the other caregiver and she was surprised, too. When they were with Mary, Mary had no trouble with pain and was unconcerned about being alone when they left.
Our client was the victim of unintentional mood management. My empathetic caregiver was communicating concern and worry to Mary, particularly as her shifts drew to a close. Mary easily read her concern and, without analysis, assumed there was something in the present to be concerned and worried about. Once she was anxious, her aches and pains became more pronounced and she didn’t want to be alone.
I have watched loving and concerned family members do the same thing. They come to visit their loved ones and bring their own sadness, guilt and loss. We watch their loved ones absorb their pain and retain it after they leave – until we fill their presence with joy and love again.
People who have dementia have no skills to analyze the reasons for the moods we bring to them. Whatever we bring into their presence will be absorbed and mirrored back to us. We should use our own rational thought skills to put aside any negative feelings we might have about their situation and come to them with our joy and love instead.