I’ve been diagnosed with dementia – What’s next?

Although being diagnosed with dementia isn’t what anyone wants, it doesn’t mean you immediately lose your rights. Legal capacity is fluid. It’s not an all-or-nothing proposition so the law allows you to continue doing anything you’re capable of doing. A diagnosis doesn’t mean you can’t use your time to maximize quality of life. Here are a few suggestions regarding what’s next.

Make sure you have an elder law attorney prepare a Will, power of attorney and health care advance directive for you. Elder Law Attorneys know what you need in these documents to ensure flexibility as life continues to happen. If you already have these documents, have them reviewed by an Elder Law Attorney. More than likely, they need to be updated.
- All beneficiary forms, deeds and property titles should also be reviewed. Don’t assume the healthy spouse (if there is one) will outlive the spouse with a dementia diagnosis.
Although there’s no requirement that you share your diagnosis with everyone, you should share it with anyone you will call on for help. For example, if you named your child as your health care decision-maker, you should tell that child. Why? So you can have a conversation with him or her about your values, what you want, what you don’t want, and so you can begin the process of planning for an uncertain future. If you don’t tell others what you want, you can’t (reasonably) complain when you don’t get it.
Keep your brain active and have fun. If you’ve been putting off something that’s on your bucket list, take the time to do it. Last time we checked, you can’t take money with you when you die, so spend some of it and have fun.
Educate yourself and your family regarding your condition and regarding the law. If necessary, bring your family to a meeting with an Elder Law Attorney and have your attorney explain that you still have rights. Your opinion still matters. Paternalism, while often well-meaning, is inappropriate as long as you’re capable of making your own decisions.
Watch out for depression. Depression can be as crippling as any other disease and receiving a dementia diagnosis is like a punch in the gut that knocks the wind out of you. Don’t let yourself have demential AND depression. Dementia is bad enough by itself.
Speak with your doctor about medicines, trials, diet, exercise and anything else that might slow the progression of dementia. Scientists are developing new therapies almost every day. Don’t give up. Fight for your health and fight every day to get anything modern medicine can provide to give you one more good day (and then another).
Prepare your home. Eliminate as many danger zones as possible. Poor lighting, drop cords, throw rugs and other household dangers should be eliminated. Traumatic health events can accellerate dementia, so do everything possible to minimize the risk of falls, broken bones or other trauma.
Enhance safety with life alert devices, monitoring or security systems.
If you’re having difficulting getting things done, get help. Unmet needs create danger zones. Help might be from a person, an organization or it might be an assistive device. Help might be a notebook or a memory tool. Regardless, get the help you need to acomplish day-to-day necessities.
When it’s not safe to drive – STOP driving. No one wants you to get hurt and you don’t want to hurt anyone else. The Hartford has an excellent page on dementia and driving and a form to prepare a family agreement on when to stop driving.
If you own guns, you need a family plan regarding who will take possession of your guns if it becomes unsae for you to keep them.
Don’t create hurdles for your current or future caregivers. If you live across the country from children who will help you, consdier moving closer to them. In appropriate cases, consider moving into a multigenerational setting (e.g., you and your children could sell your separate homes, pool your money and buy a larger home where you live together).
Make sure you have a plan for when things change. When Plan A stops working, make sure you have Plan B (or C, D, etc.) ready. For example, if you currently have help or support from a spouse, what’s the backup plan if something happened to your spouse?