Take steps now to help a loved one with dementia

“Millie” (not her real name) spent part of her childhood in refugee camps during World War II. Now, at 91, her brain can no longer keep those terrifying memories away because she has advanced dementia.

She is the sweetest lady when she meets strangers, but she experiences night terrors. She is physically still very strong, fighting off people she feels are attacking her. Her family reports angry outbursts, attacking caregivers with garden shears and chasing her husband around with a shovel when he tries to bring her back inside. Sometimes she can't sleep for two or three days.

If you are caring for a family member with any form of dementia, you may have lived through similar episodes. The Alzheimer's Association (www.alz.org) estimates that 6 million Americans are living with Alzheimer's or other forms of dementia. Of those, nearly 70% live outside a clinical setting, with most receiving care from family members or other unpaid caregivers.

It is a huge burden. When I began working with Millie's family, they told me they were at their wits' end.

You are not powerless

After a loved one receives the devastating diagnosis of Alzheimer's or dementia, you may feel you are powerless to do anything except watch, wait and care for them the best you can. Even though we have no broadly available and reliable treatments for the disease, there are steps you can take to make it easier as the disease progresses, on you as well as your loved one.

If your loved one is still in the early stages of dementia, they may still be able to grasp the medical, legal and financial implications of the disease. This is the time to make sure there is a will, an advance medical directive and a durable power of attorney, giving a family member the ability to make health and medical decisions on behalf of the individual. But even when the individual is diagnosed with the later stages of the disease, simple conversations may help them understand the need for this preplanning.

Under Illinois law, you can create four advance directive documents: a health care power of attorney, a living will, a mental health treatment preference declaration and a Do-Not-Resuscitate (DNR/Practitioner Orders for Life-Sustaining Treatment, or POLST). Copies of these forms are available at dph.illinois.gov under “Forms and Publications.”

Advance planning

The National Institute on Aging recommends other advance directives, including preferences for dialysis, blood transfusions, organ and tissue donation and brain donation. The last one is an important consideration, as brain autopsy is the only way to confirm the diagnosis and may provide information for researchers.

Her family found that Millie had donated most of her retirement savings to charities she found on the internet as her dementia progressed. To avoid a similar loss, you will want to make sure there is a financial power of attorney for the time when the individual can't make decisions on their own, in addition to the will.

Rather than going it alone, don't hesitate to engage a professional, such as a patient advocate, who has experience navigating the complicated U.S. health system, or an attorney who specializes in eldercare and estate planning. There are also money managers who help individuals with their day-to-day finances.

Creating a care plan

What if the disease is so advanced that a person is incapable of making decisions about their own well-being?

In Millie's case, a neuropsychologist's exam confirmed she has late-stage Alzheimer's. Based on that, her primary care doctor filled out a legal form saying she was unable to manage her own affairs. I compiled a complete medical profile and care plan to show the doctors she needed an inpatient geriatric psychiatric hospital admission to stabilize her medications so she is not in danger of harming herself.

I also helped the family find an assisted-living memory care facility for Millie and her husband. The family is even considering adopting an adult dog because Millie is grieving the loss of her beloved pet last year and Alzheimer's patients often respond positively to animals. The family is even planning what to do if Millie can no longer care for it. At that point, one of her daughters would be happy to add the dog to her own family.

Millie and her husband recently moved into the assisted living facility and are making the adjustment well. Though they miss their home, the family brought over their furniture and they are surrounded by treasures and memories from the past, so it feels very homey. The meals are great, the staff is kind and they are making friends. Phew! The family is relieved to have them safe and provided for and the cost is something they can afford.

Remember, planning is the key to thoughtfully and lovingly taking care of the dementia patient in your life.

• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). She recently created a three-month training course for nurses who wish to become patient advocates (see nurseadvocateentrepreneur.com). You can contact her at (312) 788-2640.