Pete’s father, Frank, has always been a positive, happy person. He lives for the moment, doesn’t take many things too seriously, and when it comes to something potentially stressful, he subscribes to the notion that “ignorance is bliss.” Everyone who knows Frank loves his positive attitude and his optimistic outlook on life. Sounds like a great way to be. The only problem is that Pete is noticing that Frank is experiencing signs of dementia, a “taboo” subject for Frank that he chalks up to senior moments and wants to avoid talking about altogether.
Pete’s father-in-law had dementia for ten years and Pete watched him go from forgetting simple things, such as driving directions, to forgetting his own wife and daughter years later. He is seeing some of the same early symptoms in his own father. His mother is also aware of Frank getting lost, forgetting to pay bills, and even wandering aimlessly in the neighborhood, but she seems to be in denial herself, making vacation plans and crossing off their bucket list items. Pete doesn’t know whether to suggest to them to get his father checked, or let his parents enjoy their retirement and live in denial for as long as possible. He knows his father-in-law was glad he knew early, as it enabled him to participate in research trials and to do what he could to stave off the symptoms of the disease for as long as possible.
Denial is Common Until “Defining Incidents” Occur
Dementia is a progressive disease in which symptoms often begin mildly and progress slowly. It’s easy for friends and loved ones, and even the person who is experiencing them, to deny them. Then, one day, there’s a “defining incident” that is often so bizarre that not even the spouse, child, or other loved one can ignore it or explain it away.
For some, “defining incidents” are when they get lost driving home and end up miles away, can’t come up with a common word, put their keys in the freezer, or leave the house in their pajamas.
Denial Can Actually Be Dangerous for a Loved One with Dementia
It’s nice to have a blissful retirement and to live life with positivity and optimism, but being in denial about dementia is a bad idea, and can even prove to be dangerous.
According to the Alzheimer’s Association, “when it comes to obtaining a diagnosis, the earlier the better.” The Alzheimer’s Association cites these reasons to not delay diagnosis:
• An early diagnosis affords a loved one and his or her family the ability to make a number of decisions that are better made in the early stages, while the person is still competent. The person can provide their input in:
– choosing medical and caregiver teams;
– reviewing and updating legal documents;
– recording the person’s future wishes for long-term care and planning for how to pay for long-term care;
– establishing who will make healthcare decisions and handle finances on your behalf.
• There’s more potential benefit from treatments if started early.
• The person could have a chance to participate in research.
• You can prevent risky activities like driving and wandering.
• Early diagnosis can even have social benefits and improve the quality of life for both the person with dementia and their caregivers. Family members can join support groups to help them handle the diagnosis and the changes to come.
What if Your Loved One Doesn’t Accept the Diagnosis?
It’s perfectly normal for those in the early stages of dementia and their loved ones to not want to accept a diagnosis. They may even seek second and third opinions and refuse to believe dementia is the cause of their family member’s symptoms.
Once confirmed, sometimes denial is simply a way of masking the fear, grief, and loss that a person newly diagnosed with dementia commonly experiences. After all, it might seem easier to say ‘there’s nothing wrong with me,’ than to face what could lie ahead. This often painful struggle with acceptance can also cause anger, moodiness, and severe depression.
Dementia denial can be a particularly frustrating obstacle for family and friends, especially if you’re trying to sort out practical ways to keep your loved one safe. Here’s are some things you can do to help:
• Be respectful: When your loved one(s) are in denial, don’t tell them they are wrong. Respectfully say that you see the situation differently. Use a kind and respectful tone. Say that it’s OK when people see things in different ways, as long as they and others are safe.
• Be patient with your loved one, listen attentively, talk about other things, then bring the conversation back to the difficult topic at hand.
• Take a different approach: Instead of trying to convince your loved one that he or she is sick, ask him or her about their goals. Use this as a springboard to discussing the next steps.
• Help maintain dignity: No matter how it’s handled, it’s very important to help retain your loved one’s dignity throughout this process.
• Address the symptoms: If the person doesn’t feel “ill,” find out what problems he or she believes exist and address those. For example, if a person feels his problem is that he is not getting enough sleep and is therefore forgetful, focus on addressing the sleep issue rather than focusing on the dementia right away.
• Take measures to keep him safe: If your loved one continues to deny there’s a problem, you still need to ensure safety. This could mean, for example, asking neighbors to look in on him or suggest helpful technology/apps to help him remember important things.
• Seek professional help, if necessary. Talk with the person’s doctor about what you should do.
• Call 911 if needed: There are times when a person’s lack of insight may cause an unsafe situation. If your loved one wanders and is in a dangerous situation, call the police for help.
• Be an advocate for your parent. Dementia denial can impede getting the help that your parent needs. Find experts in your community who can help. Plan ahead and research local assisted living memory care communities and nursing homes with memory care units that are better equipped to meet the unique needs of persons with dementia — perhaps not now, but they will need more help as their dementia progresses.
While your father might point blank refuse to accept the dementia diagnosis at first, as his condition progresses he will probably come to accept the symptoms as part of his life. He may never truly accept the diagnosis, but he is likely to reach a point where he stops saying there’s nothing wrong with him. The best you can do is to be supportive and helpful!
Planning for the future
Persons with dementia and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those with dementia and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits. If someone in your family has been diagnosed with dementia, please call us as soon as possible to make an appointment for a consultation:
Elder Law Attorney Fairfax: 703-691-1888
Elder Law Attorney Fredericksburg: 540-479-1435
Elder Law Attorney Rockville: 301-519-8041
Elder Law Attorney DC: 202-587-2797
About Evan H Farr, CELA, CAP
