When Parents With Dementia Don't Realize They Need Helpby The Candid Caregiver
Your once-easy-going dad now thinks you’re stealing from him. Your ever-frugal mom is buying odd things she finds on the Internet. You know that these types of personality changes can be signs of dementia, yet when you offer to help, you're vehemently rebuffed. How do you convince your cognitively fragile parents to accept support? How hard do you push? There’s no easy answer, but there are steps you can take.
People With Dementia May Not Recognize Their Symptoms
“Care partnerships with loved ones living with dementia are challenging at any stage,” says Daniel C. Potts, M.D., fellow of the American Academy of Neurology. “But the early stage can be particularly difficult because patients may not recognize their deficits nor the fact that they may need help with their daily activities." It's also possible that there is some deep recognition of a problem, which may cause them to resist giving up any control or autonomy that they sense is being lost.
Care Partners Must Be Innovative in Their Approach
Patients in this stage can be emotionally reactive, Dr. Potts continued. “Thus care partners must adapt their approach, always acting with empathy and compassion while validating their loved one and offering them some mastery over the situation. My advice is not to overprotect, but to support autonomy whenever possible, taking caution to maintain adequate safety. Take care not to emphasize a person's losses by asking, 'Don't you remember?'"
Tread Carefully While You Determine What Care is Needed
Unless there is a crisis or a true threat to safety, go easy. Address issues that come up one at a time and offer choices, showing respect every step of the way. It won't always be easy not to swoop in a take over when you see symptoms pop up. When that happens, remember Dr. Potts' advice: Support autonomy whenever possible.
Don’t Just Assume It’s Dementia
If the person you’re caring for hasn’t been diagnosed with dementia by a doctor, remember that there are many reversible causes for dementia symptoms so make certain that you aren’t getting too far ahead. Try to get the person to the doctor for a physical exam and possible cognitive testing. Many older adults will resist testing, particularly if they are afraid of a dementia diagnosis, but if you frame this as something that could possibly be temporary, they'll be more likely to see a doctor.
Remember That This is Your Parent or Grandparent
They might be having problems with memory; they might be paranoid; they might make poor decisions. Even so, they are still adults. They are your parents, your grandparents, or other important figures in your life. It may take work, but remind yourself repeatedly that you can’t just run rampant over their wishes unless there is a clear emergency. You’ll have a much easier time doing what needs to be done if you remember who they are in your life.
Put Yourself in Their Place
Before anything else, put yourself in their place. Adult children would do well to remember this adage no matter the condition of their parents’ cognitive health. Your viewpoint is from that of a younger person who wants to help. You feel that you know just what they need. You want to just make it all better. That kind of thinking is understandable but do reconsider. Whether or not people have dementia, everyone deserves to have their point of view considered and their dignity respected.
Offer a Choice Whenever You Can
All older adults, including those living with dementia, should be able to make as many choices as possible. If you find that your parents need help because of cognitive decline and they are refusing everything that you suggest, ask yourself if you came on too strong. Did you just come in and tell them what they were going to do or did you give them options? Even small choices matter so if there are two options, ask which they prefer and do what you can to make that happen.
See If Technology Can Help
Technology companies offer systems that can help older adults stay in their homes longer. If you tell your parents that it will help you rest more easily if they have some sensors installed in their home that can alert you to an emergency, be sure to stress that the sensors needn’t be intrusive. Once they are reassured that there won’t be a camera monitoring their private moments, they might see how the advantages can help them stay independent longer.
In-Home Support Can Work (Eventually)
Many older adults will resist having a caregiver come into their home, but if you move ahead gently, they can often learn to love it. Presenting the person you hire as a friend who needs to learn more about what older people want can help them save face and accept such a change. However you approach it, remember that it’s hard for them to admit that they need help so remember to move slowly. You might begin with a little cleaning help and go from there.
Age in Place or Assisted Living?
A common discussion that adult children have with their parents, whether or not the parents are cognitively impaired, is should they adapt their home so that they can age in place or consider moving to assisted living? For most aging adults, there’s a reflexive reaction against moving, however safety and isolation can be a problem for those who age at home. Do what you can to allow choices, but don’t be afraid to offer alternatives, too. We can’t know the future but having a plan helps.
The Take Away: Older Adults Deserve as Much Autonomy as Possible
Deciding how we can help the people we love when they show signs of cognitive decline can get complicated, especially if they can’t make sound decisions about their living arrangements and care. That being said, everyone, including people living with dementia, deserve to be able to make as many choices about their own life as possible. Approach them with respect for their time on earth and work carefully toward finding a compromise that a keeps them reasonably safe, yet affirms their dignity.