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.
Ongoing loss of memory and rational thought is unavoidable and incurable (at present) for people with dementia. We can’t change that for them, but we can make the experience less lonely and more comfortable. We can be teammates rather than superiors.
Be a little forgetful yourself.
There’s nothing worse than always being the person in the wrong—the person who loses things and forgets appointments and is confused about what’s going on. We can’t help our loved ones or clients develop a better memory. Reminding them or jogging their memories won’t bring back the skills that dementia is taking away.
Instead, we can make forgetfulness and confusion into something that is a normal part of daily life rather than something that is upsetting. When it’s time to go out, say what you might be thinking internally out loud: “Hmm, now where did I leave my keys? Not in my purse—maybe in the kitchen? I’d better go and look.” When an appointment is overlooked or a deadline missed, rather than being upset and dismayed by the error, react to it with complacency, as a normal part of life. After all, if we’re living or working with someone who has dementia, we do need to accept such mistakes as inevitable and normal.
Blame a third-party.
When our loved ones or clients lack rational thought, we can’t expect them to understand our explanations for why they should or shouldn’t do something. Often our clients lose their understanding of hygiene or sanitation. It becomes very difficult to get them to wash their hands or take showers, because understanding that germs can cause sickness or poor hygiene can cause skin issues requires the ability to see cause and effect, as well as sequence or process—rational thought skills they are losing or have already lost.
Instead of attempting to change someone’s behavior with explanations even though they lack the ability to use analysis, change the situation into something you experience together and can commiserate about.
Here, we’re always looking for a distant third party to blame for causing us to do something. We wash our hands with our clients because we don’t want to catch the flu from “strangers” who also use the bathroom. We get out of the hot tub together because “the insurance company” enforces a 15-minute rule. We take our vitamins or eat our vegetables because we don’t want the doctor to be concerned.
When someone lacks rational thought, you don’t have to propose entirely logical reasons for doing something. What’s more important is that you and your companion with dementia are both required to do whatever it is, so that you can act as teammates in complying.
Destigmatizing forgetfulness and mistakes is a very valuable way to help our loved ones retain a sense of self, despite dementia.