My Parent Has Dementia – What Do I Do?
Updated: Dec 8, 2022
Dementia cases are on the rise, and it’s currently the seventh leading cause of death worldwide. [i] As our life expectancies increase, we likely know someone or have at least heard about someone who is struggling with dementia. In this article, we explore some potential steps you can take if you know or think your parent has dementia.
1. What Qualifies as Dementia and Where Does Alzheimer’s Fit In?
Dementia is a syndrome – usually of a chronic or progressive nature – that leads to deterioration in cognitive function (i.e., the ability to process thought) beyond what might be expected from the usual consequences of biological aging. [ii] It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment. [iii] The impairment in cognitive function is commonly accompanied and occasionally preceded by changes in mood, emotional control, behavior, or motivation. [iv]
Currently, more than 55 million people live with dementia worldwide, and there are nearly 10 million new cases yearly. [v] There are many different forms of dementia, but Alzheimer's disease is the most common and may contribute to 60-70% of cases. [vi] Alzheimer’s is marked by symptoms of dementia that gradually get worse over time. [vii] Alzheimer's disease first affects the part of the brain associated with learning, so early symptoms often include changes in memory, thinking, and reasoning skills. [viii] As the disease progresses, symptoms become more severe, including confusion, behavior changes, and other challenges. [ix]
2. Show Compassion First
Put yourself in your parent’s shoes. As they navigate this condition, there is likely to be considerable fear and anxiety. Depending on the stage and type of dementia, it could be absolutely devasting for them. Coping with dementia may cause your parent to wrestle with questions about independence, self-worth, and mortality. Hopefully, they’ve lived a long, fruitful life, but even still, managing dementia will be a difficult journey.
Depending on the severity of their condition, at some point, it may be prudent for your parent to turn over control of various aspects of their life. Imagine how you’d feel if you were being asked to do so. If the roles were reversed, and your child came to you concerned that you may have dementia, it would likely be quite off-putting and may even feel disrespectful. So, if you are raising this issue with your parent, try to do it in the most considerate way possible. Broaching this topic should come from a place of reverence and desire to do what’s in your parent’s best interest.
If you’re at the stage where you think your parent may have dementia, then it’ll be important to give your parent some advance notice that you want to have a discussion (don’t just spring it on them!). It’s also a good idea to approach the topic in a safe environment (such as their home). If the conversation goes well, then you may consider having them examined by a medical professional. However, be aware that a formal designation about their mental capacity could impact any estate plans they already have in place, including limiting their ability to revise them; and it could limit their ability to create a new estate plan. Alternatively, it’s possible that during your conversation, your parent may dispel any concerns you have. Whatever happens, keep an open mind, and try to listen more than you speak.
If a medical professional has already confirmed that your parent has dementia, patience will be one of your biggest assets. As you interact with your parent, slowing the pace of conversation, keeping questions simple, and using positive non-verbal cues (such as a comforting touch) can all be helpful. [x]
3. Evaluate Their Living Situation
Since there is a wide range in how dementia can affect people, and since it can change over time, you may need to evaluate your parent’s living situation on an ongoing basis. Keeping your parent physically safe is crucial.
If your parent is in an assisted living facility, you likely already have a good idea of their day-to-day life, and you may have already made some hard decisions. However, several variables should be considered if your parent is living at home independently. Depending on their condition, a few areas to ponder: 1) whether they’re capable of driving, cooking, and using sharp objects, and 2) potential risks around the home, such as stairs, swimming pools, animals, poor lighting, and guns or weapons.
A significant area of concern is whether there’s a risk that your parent could leave their home and become lost. Several years ago, I had an older man wander into my second-story townhouse near Westlake Village. He was completely unaware of who he was or how he got there. Although he didn’t have any identification of his own, luckily, he remembered he had a son and had one of his son’s business cards with him. I contacted his son, who confirmed that his father had somehow wandered away from a nearby assisted living facility. All that to say, if your parent may be prone to losing their sense of their surroundings, a medical ID tag and/or a location-based tracking device may be helpful.
4. Offer or Arrange Help to Manage Their Daily Affairs
With dementia, managing “the business of life” can be challenging. Paying bills, managing finances, keeping appointments, remembering to eat, and attending to personal hygiene can all become rather tedious. Your parent could potentially need assistance with all these tasks. As a starting point, if your parent’s spouse, you, or other family members can take on some of these tasks, make the offer and ask your parent what they would prefer. While you may be unable to meet all your parent’s wishes, it's essential to consider them. If your parent has trouble understanding you, simplify your explanations and the decisions you expect them to make. [xi]
5. Consult Their Estate Plan and Do Some Data Gathering
If your parent has an estate plan already, you should review it with them to see if it is up to date. If they do not have an estate plan, this would be an excellent opportunity to create one through an estate planning attorney.
If there is an existing estate plan and it includes a trust or power of attorney, reviewing these documents will be an essential step in navigating your parent’s dementia. These documents govern who controls your parent’s assets and affairs while they’re still living. Decisions about who will provide care and assist with your parent’s daily affairs should be made in a manner that is consistent with these documents (or the documents should be revised so they accurately reflect who will be involved).
Regarding assets, you should work with your parent to identify and locate all assets they have, including (but not limited to) real estate, bank accounts, CD accounts, life insurance policies, retirement accounts, safe deposit boxes, and cryptocurrency. How these assets are titled is also a vital piece of the puzzle, as the titling will eventually impact how the assets are distributed. As time passes and your parent’s memory and cooperation fade, it will become harder to ascertain this information. If possible, don’t delay.
One concept often overlooked is a voluntary transfer of control before the onset of dementia. Your parent could simply decide they no longer wish to deal with their personal affairs and turn over control to a spouse, you, or someone else they trust. In this scenario, your parent still has full mental capacity but is choosing to step away from the intricacies of managing their assets and finances, paying bills, etc. To implement this, if there is a trust, they may be able to resign as trustee; and if there is a power of attorney, it may be able to be used as-is (depending on how it’s structured), or a new one could be executed that would become effective immediately. Of course, for this to be feasible, your parent would need someone(s) who is willing and capable of stepping into this critical role.
Navigating the complexities of a parent’s dementia can be mentally and physically exhausting for all involved. If you find yourself on this path, and especially if you have questions about how your parent’s estate plan plays a role, we’d be happy to help you assess the situation and work together to meet your parent’s needs.
Disclosures: This information should not be construed as medical, investment, tax, or legal advice.