Family caregivers often ask, “how do you tell someone they have dementia?” In some cases, the answer may be that you simply can’t. Damage in the brain can cause people with Alzheimer’s, dementia, stroke, brain tumors, and other cognitive impairments to believe that there’s nothing wrong with them. When that happens, it’s called anosognosia. The word literally means “to not know a disease” and it’s much more than being in denial.
Anosognosia is a condition that causes someone to be unaware of their mental health condition and how it affects them. Someone who has been properly diagnosed with dementia, but has anosognosia, doesn’t know or believe that they have dementia. The person might sometimes understand what’s happening, and at other times firmly believe that they’re completely fine.
The unawareness of cognitive impairment can be related to memory, general thinking skills, emotions, or physical abilities. They might have occasional difficulty with language skills, like finding words, and even if they forget more important tasks like bathing, missing appointments, or burning food on the stove, they’re still likely to insist that they don’t need help. They’ll probably also insist that they’re entirely capable of living independently, despite clear evidence that things are going wrong. They try to explain away these situations with excuses about forgetfulness or fatigue. If someone reminds them of their cognitive impairment, someone with anosognosia often gets angry and defensive because in their mind they’re 100% convinced that there is no problem.
It’s important to understand that someone who has anosognosia isn’t just being difficult or in denial – this is something different. When someone is in denial, they are aware of a fact, but refuse to accept it. With anosognosia, the damage that dementia is causing in their brain makes it impossible for that person to be aware of what’s happening to them. So, how can family caregivers help?
- Don’t try to convince them they have dementia - Using reason and evidence to explain or insist that someone has dementia is not going to help. It will only upset them and will likely make them even more convinced that they’re right and you’re wrong. A more effective way is to discreetly make changes that will help them live safely. It is possible you will need some outside help like in-home care to provide some support when you are not there. Overall, stay calm and focused on their feelings when expressing your concerns and keep your comments as subtle and positive as possible.
- Work with their care team - When your loved one’s dementia symptoms are interfering with their daily lives, it’s time to start working with their care team – doctors, relatives, friends, and caregivers. Explain the problems your loved one is having and help the team understand that they aren’t aware of their dementia and why it won’t help to try to convince them logically. Work together to creatively provide your loved one the help they need without waiting for them to ask for it or forcing them to admit there’s a problem.
- Discreetly make life as safe as possible - Making your loved one’s life simpler and safer can help prevent someone with anosognosia in dementia from hurting themselves or others. Some people might try to drive, manage money, cook, or do other activities that could be dangerous because of their cognitive impairment. Without mentioning dementia as the reason, you may need to make changes like finding creative ways to stop them from driving, working together so you can prevent problems with finances, making the kitchen safer, or making the home safer overall. Use positive approaches and present it as removing burdens from their life so they can do more of what they enjoy rather than doing chores. Focus on allowing them to do as much as they can independently while yourself or another caregiver is available to help when needed. Finding ways to help preserve pride will be most effective. For example, you might say that you don’t enjoy eating alone or you want to spend more quality time together, so you want to eat dinner with them. Or, say that you have some amazing new recipes you need their help to taste-test, so you’ll leave the prepared meals in their fridge to eat during the week. Seniors Helping Seniors of North & East Raleigh have experienced caregivers that can provide support your loved one needs, provided by mature caring persons who share many of the same life experiences.
- Avoid correcting them - When someone has dementia, their brain may experience a different version of reality because of the damage the disease has caused. Dementia care experts recommend stepping into their reality rather than trying to correct them. Their brain is losing the ability to process information and forcing them to join the “real world” only causes confusion, anxiety, fear, and anger. If something is a serious safety issue, you may have no choice but to insist on doing things your way. But as much as you can, try to solve problems without them knowing, choose your battles, and let the non-serious things go to avoid conflict as much as possible – stress only makes challenging dementia symptoms worse.
- Present solutions positively and subtly - The less your loved one feels that they’re being limited for reasons they don’t understand, the less likely they are to become angry or resist help. Generally, when someone has anosognosia, it helps to be creative and offer solutions in a positive way rather than talking about the problem. For example, you might say, “It’s a beautiful day outside. Let’s go for a walk together so we can both enjoy the fresh air.” That’s positive and much easier to accept than if you had said, “You know you can’t go outside alone; you’ll get lost. I have to go with you.” Or, offer a compromise with a positive incentive, like “Let’s clean the house together so we’ll be done twice as fast and have plenty of time to watch your favorite show.” Reminding them about taking medicine can also be done in a positive way. For example, say “It’s time for both of us to take our medicine. We both need these to keep ourselves in tip-top health.” (If you don’t need any medications at that time, you could “take” mini M&Ms, tiny breath mints, or something else that appears to be a pill, but is harmless. Keep them in a pill bottle to make them look more real.)
- Learn more dementia care techniques - Many of the most effective dementia care and communication techniques aren’t easily figured out and might even be the opposite of our instincts. Not knowing these helpful techniques can cause added frustration and stress for both you and your older adult. That’s why educating yourself is so important. Learning as much as you can about the disease helps you solve top challenges and improves quality of life for both of you.
SHS of North & East Raleigh has years of experience dealing with dementia and anosognosia. Contact us today to talk about your situation. We match seniors who need help with senior caregivers who want to help in the Triangle area and surrounding communities, including Wake Forest, North Raleigh, East Raleigh, North Hills, Brier Creek, Wakefield, Rolesville, and Clayton. The goal of in-home companion care is to help brighten seniors’ lives and allow them to continue to live independently. For more information on our services, please contact us at firstname.lastname@example.org or call 919-761-5346.