Is diagnosing the specific type of dementia important?
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.
Why is mood management so important?
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.
Dementia takes away a sense of self—but we can give it back (part 5 of 5)
The fifth step we can take is in helping our loved ones with dementia retain a sense of self is to give them opportunities to be kind and helpful. There is nothing more uplifting and effective at making us feel better about ourselves than being able to do something for someone else.
When we create opportunities for our loved ones to give something to us or do something for us, we are helping them achieve contentment and well-being.
Give a chance to be helpful.
Having dementia means becoming less able not only to do things for ourselves but also for others. And yet, being able to offer something of value in our relationships is essential for us to experience quality of life.
Look for ways to make it possible for your loved one or client to be helpful, even though losing rational thought and memory makes it increasingly difficult to perform tasks.
One of the skills lost in rational thought is being able to perceive sequences or steps in a process. This means that your loved one will become unable to do such tasks as making coffee, setting the table, or washing a load of laundry. They will not, however, become unable to perform single steps with a little gentle direction. Although he cannot make coffee alone, you might ask for help in setting out or filling two mugs, or carrying them to the table. Although she might be unable to set the table entirely, she may be able to put a plate at each place. Folding a laundry basket of tea towels or facecloths is a task that makes many people feel helpful and needed.
Recently, one of our clients had to transition from home into a memory care facility. We were careful to arrange for her DAWN caregiver to continue to visit her there. Her family arranged to take turns visiting her each day. However, when they took her to her new home she was delighted. She had been a nurse for many years and, upon walking inside, she looked around and said, “Wonderful – thank you for giving me my job back!” Her transition from home to care facility was painless because she believed that she had been appointed as the administrative nurse to oversee the care of her new housemates.
Give a chance to give.
Having dementia means being the constant recipient of attention and assistance, yet we all need to be able to give as well as receive. Even if it is only a hug or a listening ear, we need to be careful to give those experiencing dementia the opportunity to give back to us.
At DAWN, when we see that a client needs a hug, we say we need one and ask her to give one to us. She gets the hug and physical reassurance she needs, but she also gets the pleasure of having helped someone else. During the holiday season, we carefully make the selection and giving of gifts a part of our care plans, so that our clients can enjoy being gracious and generous. Giving is an essential part of maintaining and enjoying a sense of well-being.
This concludes my five-part series on how we can help our loved ones and clients continue to retain a sense of self, despite dementia. I hope it’s helped you lower your stress as a caregiver and increase your loved one’s sense of wellbeing.