Dementia is a debilitating and highly variable disease. The progressive nature of dementia puts enormous pressure on families to ensure that their loved ones are safe and cared for.
As dementia can be so unpredictable, it helps to understand and prepare for some of the symptoms that your parent may end up having. Start by educating yourself about symptoms, support resources, and the possible progression of the disease.
Jump ahead to these sections:
- What to Do If Your Parent Is in Denial About Their Dementia Symptoms
- What to Do If Your Parent Is in Denial About Their Dementia Diagnosis
- What to Do If Your Parent With Dementia Is Resistant to Care
One of these symptoms is a denial of dementia, which is called anosognosia. The term anosognosia refers to impaired insight or unawareness that the person has dementia and the deficits associated with the disease.
On a practical level, the condition of anosognosia can be very challenging for families to cope with daily. Your parent may be angry, refuse safety recommendations, or even deny that they need daily help. There is no one size fits all solution to this frustrating problem, but we have some tips listed below to help you cope.
What to Do If Your Parent Is in Denial About Their Dementia Symptoms
The challenging part in handling the denial of symptoms is that it can be a nonstop problem requiring lots of energy. Many people with dementia have significant memory loss, which means that you will need to repeat your approach. In the end, remember that the goal is to keep your parent calm, safe, and as happy as possible.
1. Make a long-term care plan
Dementia is a progressive disease that gets worse over time. A long-term care plan involves making sure you have advance directives in place when the time comes to advocate for your parent.
It might be necessary to start guardianship proceedings to assume control of healthcare and financial decisions in some cases. If you wait until your parent is too far along in the disease process, it could be very disruptive. Starting before there is a need is the best approach.
2. Try not to disagree
The hallmark of anosognosia or denial of symptoms is that your parent has no control over what they think, so no matter how much you try and convince them that they are unsafe or have memory problems, it won’t have much effect. Disagreeing is only likely to cause agitation or anger.
3. Be kind and supportive
No one knows what goes on in the minds of people with dementia, but the experience can be confusing, frightening, and bewildering for them. These emotions can lead to agitation and anger when someone doesn’t feel they are in control.
A kind and supportive approach will help keep your parent calm and relaxed. It can also give you a better opportunity to communicate changes and plans for care.
4. Make safety a priority
Safety becomes more crucial than ever when a parent is in denial of their symptoms because the information they are giving you is not reliable. For example, you may be actively discouraging your aging parent from driving but they may assure you that they are driving just fine.
With dementia, unfortunately, you can’t take what your parent tells you at face value. Any information should be validated if possible, and there are ways to do this that we will discuss in the next tip.
5. Visit more often or find someone else who can
When your parent denies their symptoms of dementia such as forgetfulness, inability to manage healthcare, finances, or driving, this puts them at risk. If you already have healthcare and financial authority, it will be easier to investigate how your parent is doing.
If not, try to visit more often so that you can observe the house for cleanliness, maintenance issues, and other tasks. Ask to go for a drive with your parent so you can monitor their skills. Check medication containers to see if medications are taken correctly.
If you are a long-distance family member, consider hiring a geriatric care manager to complete an assessment. They can help manage care and check in consistently. Geriatric care managers can also give you regular reports on how your parent is doing, which can give you peace of mind.
6. Be on the lookout for fraud and scams
When someone is in denial about their symptoms, they may think their decision-making is rational and appropriate. Denial of symptoms can make your parent vulnerable to scams and fraud.
Impaired judgment is one of the most common symptoms of dementia and can lead to catastrophic financial decisions. Obtaining power of attorney is advisable so you can monitor any signs of financial exploitation.
What to Do If Your Parent Is in Denial About Their Dementia Diagnosis
A denial of a dementia diagnosis is very common even in the early phases of the disease. Who wants to admit they have a problem that causes memory loss and for which there is no cure?
There is a stigma around having dementia. Those with dementia worry that if people know, they will be shunned or not know how to interact. It is crucial to be sensitive to this issue while helping your parent realize they have a problem.
7. Focus on problems and solutions
By focusing on problems and solutions for those problems, you afford your parent some dignity. Pointing out their diagnosis of dementia can be embarrassing for them and will only drive them further into denial.
Instead, try identifying the problems first. Examples would be wandering, falling, difficulty managing medications, and then find solutions to those problems. Your parent may be much more likely to recognize and accept that there are safety issues and allow you to put things in place to address those.
You can add or install some safety features that your parent doesn’t even know have been done. Some ideas can include installing alarms on windows and doors, removing clutter that increases fall risk, improving lighting, and installing handrails. Many of these additions will go unnoticed by your parent.
8. Be sensitive around other people
Nothing is worse than having your parent hear you talk about the fact that they have dementia around other people. Sharing your concerns about the diagnosis is healthy, but it doesn’t have to be in earshot of your parent. Try being sensitive to your parent’s feelings when around family or friends. Speak to your parent, not about them.
9. Enlist the help of a physician
You can’t totally hide a dementia diagnosis from your parent or encourage their denial. A process of acceptance requires respect, empowerment, and support.
Physicians who work with people who have dementia are accustomed to having these conversations. Their authority can be a big help, particularly if your parent needs to start a new treatment or agree to caregiving.
What to Do If Your Parent With Dementia Is Resistant to Care
If your parent with dementia is refusing help, you may be unsure of what to do next. A parent with dementia resisting care might be one of the most challenging problems to deal with. They may think that they are fine, when in fact they are not functioning independently or safely without help.
In many cases, someone with dementia will flat out reject care and even refuse to let a caregiver in the home. If you are the primary caregiver, the same might occur. That said, there are ways to help convince your parent with dementia to accept the care they need.
10. Identify the fears
A parent with dementia who is resistant to care may have unexpressed fears and anxieties. Try to get to the reason for the resistance, which might have to do with shame, fear of a new person in the house, or loss of control.
Some people with dementia do not want a stranger to care for them and prefer to rely on family members. Relying on family members may no longer be possible due to time constraints or caregiver burnout.
11. Start slowly
If you are introducing a professional caregiver to your parent, do so carefully and slowly, especially if you or another family member will be pulling back some.
Starting with a couple of hours a day can give your parent time to adjust and for you to see if it is a good match. If you start too fast or with too many hours, your parent may become angry and even more resistant.
Over time, if things go well, you can gradually increase care. If there seems to be caregiver incompatibility, don’t hesitate to try someone else. However, this may all be moot if you think that a new caregiver is unable to make a significant difference.
12. Ask for help from others
Sometimes another person will have the magic touch. Asking for help in these situations is perfectly acceptable. It might even be a friend or clergy member who can convince your parent that they need help. It is, however, a balancing act because you don’t want your parent to feel overwhelmed with pressure from other people.
13. Be as flexible as you can
Convincing someone to do something they don’t want to requires a flexible “let’s see if this sticks!” attitude. People with dementia can change through time. While some people get more resistant and angry, others become softer and more cooperative.
You may have to change your strategy to get the care your parent needs. You may also have to take a step back from time to time and realize you can’t control what your parent wants.
14. Encourage pleasant activities
One underappreciated technique is to focus on activities that your parent enjoys. Or even trying new things to keep your parent engaged and stimulated. Feeling connected and involved can reduce anxiety and encourage cooperation.
Helping A Parent With Dementia in Denial
A parent with dementia who is in denial will test your resolve, but keep things in perspective. Do what you can to keep your parent safe and happy by trying our suggestions. And don’t forget to take care of yourself in the process.
Sources:
- de Ruitjer, Naomi S, Anne M.G. Schoonbrood, Björn van Twillert, and Erik I. Hoff. “Anosognosia in Dementia: A Review of Current Assessment Instruments.” Alzheimer’s & Dementia: Diagnosis, Assessment, and Disease Monitoring, Alzheimer’s Association, 30 September 2020, www.ncbi.nlm.nih.gov/pmc/articles/PMC7527687/
- “Accepting the Diagnosis.” Alzheimer’s Association, www.alz.org/help-support/caregiving/stages-behaviors/accepting_the_diagnosis