There’s a good post on today’s The Caregiver Space (thecaregiverspace.org) blog about anosognosia. This is the term used when a person with dementia is unaware he/she has dementia. The author offers several guidelines to caregivers. I especially like the last one — Foregiveness is important for all concerned. Here are the guidelines:
* Remember they genuinely don’t know they have dementia.
* Don’t try to convince them they have deficits.
* Understand why anosognosia occurs.
* Don’t expect the person to stick to a promise or agreement.
* Try to encourage their independence as much as possible within safe boundaries.
* Give them a couple of choices rather than leaving things open ended.
* Continue to assess.
* Honesty may not always be the best policy for someone with dementia.
* Forgiveness is important for all concerned.
The full blog post is copied below.
What is Anosognosia and How Does it Impact You as a Caregiver?
by Iris Waichler
The Caregiver Space
Feb 1, 2018
What is Anosognosia and How Does it Impact You as a Caregiver?
One of the toughest scenarios caregivers have to face is when they are taking care of someone who has dementia and is unaware of it. This condition can occur with people who have Alzheimer’s or other forms of dementia, strokes, or brain disorders. This condition is called anosognosia. This presents numerous challenges for both the caregiver and the person they are caring for. What are the most useful strategies you can employ as a caregiver in this type of situation? Here are some useful tips to offer guidelines:
Remember they genuinely don’t know they have dementia.
Keep in mind that person genuinely does not understand their abilities and limitations. It is a medical condition. They are not playing games or in denial about their ability to function. Try not to cast blame in this situation. Be as patient and understanding as you can reminding them your goal is to help keep them as safe as possible and maintain a reasonable quality of life given the medical issues you are faced with.
Don’t try to convince them they have deficits.
Trying to get a person with this condition to understand they have specific limitations will just cause you to get angry and frustrated. They are unable to comprehend or accept what you are saying. They will become defensive and possibly angry or agitated. It will only heighten conflicts in your relationship and hinder your role and ability as a caregiver.
Understand why anosognosia occurs.
Those who do research in this area report this condition occurs where there is damage in the frontal lobe area of the brain. This is the area of the brain the includes functions like problem solving, and higher functions like abstract reasoning and spacial orientation. The New York Times reports that “estimates up to 42 percent of people with early Alzheimer’s Disease have symptoms of anosognosia.”
Don’t expect the person to stick to a promise or agreement.
Trying to bargain with people with this diagnosis is not useful. They will not remember what they agreed to or that you even had a discussion about it. Visual cues may help. This means writing things down to reinforce the message you are trying to deliver. Making an environment as safe as possible is also a good strategy. For example, having a coffee maker that automatically turns off rather than relying on someone with memory issues to remember.
Try to encourage their independence as much as possible within safe boundaries.
It is very tempting to just jump in and do things for someone who needs help or may not remember all the steps involved in completing a task. Try to be realistic about what they can and cannot. Being there when they cook to safely supervise in subtle ways is an example of maximizing independence within safe parameters. Try to find the right balance for that given moment. Remember it may not be true in the future depending on how they are doing.
Give them a couple of choices rather than leaving things open ended.
For example, rather than saying when would you like to go the grocery store offer the choice of Tuesday at 10am or Friday at 1. Keep the choices in a way that meets their needs and is a favorable scenario for you as the caregiver.
Continue to assess.
Remember the person you are caring for may have good days and bad days or moments in the day where they are very appropriate and lucid. Watch for a pattern of increased decline in function or there may be times of day where they do better or worse. Have a healthcare professional help you with this assessment and be flexible and prepared in terms of structuring supportive services based on what you observe.
Honesty may not always be the best policy for someone with dementia.
There are times where engaging in a battle may not be the best thing to do for you as the caregiver. By definition people who have memory loss forget things and it is not willful. If they forget that a close friend has moved away you may not want to remind them of that. Does it really matter if they think they worked at a bank and really didn’t? Pick and choose the times when you must be honest or transparent with them. Your strategic guideline should be any tactic that reduces stress for you as the caregiver and the person you are caring for is a good direction to take.
Forgiveness is important for all concerned.
You need to remind yourself that the person you are caring for is not necessarily acting out of malice when they can’t acknowledge or differentiate what is real and what is not. Try to be as patient and forgiving as you possibly can. Give yourself a break or timeout if the situation is escalating or frustration or anger are emotions that are growing. You must always remember to forgive yourself as a caregiver. There will be moments when you get angry or frustrated or overwhelmed. You must be able to forgive yourself. If this occurs with increased frequency it is a signal that you need support as a caregiver and some respite time to recharge.
About Iris Waichler
Iris Waichler, MSW, LCSW is the author of Role Reversal How to Take Care of Yourself and Your Aging Parents. Role Reversal is the winner of 5 major book awards. Ms. Waichler has been a medical social worker and patient advocate for 40 years. She has done freelance writing, counseling, and workshops on patient advocacy and healthcare related issues for 17 years. Find out more at her website http://iriswaichler.wpengine.com