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.
As dementia caregivers, we do both ourselves and our loved ones great harm when we focus on what is lost to dementia rather than what is kept. At DAWN, we focus on our clients’ abilities, not their disabilities.
Dementia is the condition of progressive cognitive impairment, but not a condition of complete cognitive impairment – not for a very long time, if at all. When we engage with people experiencing dementia only on the level of what they cannot do, we disable them even more.
There are abilities in dementia. These are and should be recognized as strengths – skills that people can still use to enjoy daily life. What are these skills?
Our intuitive thought processes.
Medical science tells us that people with dementia are losing executive thought functions as well as the ability to use judgment and make decisions. That’s a helpful diagnosis for doctors, but it doesn’t help me understand how to enjoy spending time with someone experiencing dementia. We caregivers need to think in terms of what our loved ones can and cannot do. Here, we see our clients lose the ability to see cause and effect, prioritize actions and ideas, or follow sequences (all rational thought processes) but we don’t see them lose their intuitive thought processes.
It’s intuitive thought that enables us to do the fun things in life: to be creative, enjoy beauty in all its forms, feel our own feelings and read the moods and feelings of those around us. Intuitive thought helps us gather and enjoy sensory data – everything we can see, hear, taste, smell and touch. When caregivers realize that their loved ones are able to do these things, they can fill their lives with sensory stimulation and beauty, while taking care of rational thinking for them. The result is companionship and mutual enjoyment of the present.
Our experiential selves.
Yes, people with dementia are losing memory, but they are not losing the ability to experience. We have both remembering selves and experiential selves.
When I am with my clients and fully present (enjoying the moment with them), we have a wonderful time. They feel valued, accepted and satisfied. It doesn’t matter that they cannot recall what we did a day, hour, or even minute later. They have the experience and their positive mood will last.
Because I recognize that my clients continue to experience the present despite dementia, we can experience companionship and enjoy our time together. I make sure that their experiential selves are given lots of positive stimulation, although I don’t expect them to recall it later.
The tools of mindlessness.
I believe mindlessness is as valuable to those of us with dementia as mindfulness is to those of us with healthy brains. Without rational thought, people with dementia lose the ability to follow the steps of a task or tune out distractions. This makes simple tasks like getting dressed or eating a meal difficult.
However, if they are still in their own homes – where they have performed a task many times before – they can use muscle memory and automatic thinking scripts (the tools of mindlessness) to continue to function more successfully for longer.
When we are caring for people with dementia, our focus should be on what they can do, not on what they cannot do. Putting our focus on their strengths enhances companionship and lowers stress for all.
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.