When someone you love receives a diagnosis of dementia, it is common to feel anxious and stressed. One of the biggest challenges is to know how much care to provide at the early states. Your mom or dad may still be very independent. They may be working, driving, and taking care of their physical needs. They may still be autonomous and you want to help them stay there for as long as possible.
Don’t let a dementia diagnosis take all that away in an instant. Focus on helping them maintain their independence and self-confidence.
At a recent presentation I gave, a man approached me afterwards to ask questions and to share where he was at. He recognized that he was struggling with memory issues. He and his wife were planning to move into a retirement residence. They had sold their house and were going to their winter home in Florida to enjoy it but also to sell it. They were still physically healthy and doing well but he knew things were changing for him.
He told me, “I’m not afraid of what is coming — I just want to handle it well.”
One of the take-aways he got from my presentation was that there were things he could improve in his lifestyle that would have a measurable impact on his brain health. Even with a dementia diagnosis this is true. There are needle movers — things we can do that have a measurable impact on disease progression.
His big change was going to come in increasing his level of exercise. He was not doing any exercise and I encouraged him to start walking. Going from nothing to something was going to make a difference for him.
A dementia diagnosis shakes self-confidence. Focusing on lifestyle changes that can improve confidence can have a measurable impact on quality of life.
You may need to be proactive in managing your loved one’s schedule, finances, or budget. But focus on facilitating rather than taking it over completely. As well, be aware that there is a certain amount of apathy that comes with a disease like dementia. Self-motivation may be difficult and you may find this frustrating.
Try to find the balance between independence and interdependence. Focus on helping them develop strategies to stay independent. This can ease your burden and increase their confidence.
Ask Yourself These Questions
1. It is safe for them to do this independently? They may not do this activity as well as they used to but if it is still safe for them to do it — let them do it. And provide lots of encouragement. Think of yourself as their coach. The best coaches encourage and inspire their athletes to do their best … so inspire and encourage them.
Create a climate for success. For example, if they are not so stable, make sure they have a walker or cane and that the space they live in is easy to maneuver through. Remove throw rugs and arrange pieces of furniture so that movement is straightforward.
2. Is this activity too stressful? Try to minimize their stress with activities that they find challenging. For example, if they find grocery shopping frustrating, ask them to help you write up a grocery list. Then either you can shop together or you can go to the store for them.
Sometimes the number of stimuli in an environment can be overwhelming and make the individual shut down. At a certain point, it may just be too overwhelming for them to go to the grocery store, or you may need to choose a quiet moment to go. Stay aware of how they are reacting and remember there are good days and bad ones. Don’t decide on a course of action based on one bad day.
3. Can they do this? Always start with the belief that the person with dementia is competent. Allow them to try things independently and if frustration occurs, look to solve the current issue. Try and stay focused on the specific problem and do not make big generalizations.
For example, if they are having trouble with getting dressed, don’t assume that they can’t dress themselves anymore. Look at their clothing and try and find pieces that are easy to put on. Depending on what they struggle with, look for zippers instead of buttons, Velcro instead of shoelaces, and elastic waistbands.
4. Is this a current problem? Try to stay in the present and focus on current problems. As the saying goes — “don’t go borrowing trouble”. When we use our imagination to foresee how things will unfold, many times we create problems that may or may not occur. As well, the problems are taken out of context and so the solutions are not necessarily obvious. Dementia progression is slow. It doesn’t happen overnight and focusing on the here and now can help you find the joy in your relationship.
5. Have I asked them what they want? Ask if they need or would like help before intervening. Respect their innate dignity as a human being and ask. Do not just jump in and take over.
As well, have open discussions about care and don’t assume that feelings or thoughts on this issue won’t change or evolve over time. Create an atmosphere of trust, so that the individual can share their worries and fears without the added worry that all their autonomy will be taken away from them. Let them make as many choices as possible.
6. Am I enjoying them? Finally, spend quality time together doing activities and try to work as a team. There will be lots of moments of laughter, love, and joy to share. Focus on the positive and create a framework of honesty and trust, knowing that you will walk this path together.
This time of your life will be challenging but it can also be rewarding. Ask yourself the six questions to help you navigate the caregiving journey.
Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.