When a parent or loved one is diagnosed with Alzheimer’s disease or another dementia, you’ll find a range of emotions swirling through your mind, and you may be tempted to make promises without thinking through the ramifications. For example, you might promise your mom you’ll never put her in a care facility or agree to care for your dad regardless of how challenging his symptoms become. Those promises might seem reasonable in the early stages of the disease, but you might discover that you need help providing care once symptoms worsen.
“This is a familiar scenario,” said Lori Nisson, family and community services director at Banner Alzheimer’s Institute and Banner Sun Health Research Institute in Arizona. “Discussing these topics can be difficult, so we tend to put them off. But it’s important to have these conversations early, so your family member can share their thoughts and preferences about their future care.”
These conversations also allow you to prepare for decisions you’ll need to make in the future. “You may begin to discuss the importance of quality of life versus quantity of life,” Nisson said. “You can also talk about how you will coordinate care and who they would like to delegate to make health care, legal and financial decisions if they are unable.”
Of course, these may be difficult, stressful conversations. Expect it can take multiple discussions to get to the root of the discomfort and create a solid plan for the future.
Here are the topics Nisson recommends you cover in your conversations.
1. Complete advanced directives
These documents allow you to make health care decisions and manage finances for your loved ones when they are no longer able to do so. All adults — not just people with a dementia diagnosis — should complete advanced directives. So, this conversation is an excellent place to start. Advanced directives may include:
- Medical power of attorney
- Mental health power of attorney
- Financial power of attorney
Each state has different forms for powers of attorney, so be sure to research the requirements in your area. And, if your parent or loved one is your power of attorney, be sure to update your own documents.
As part of this conversation, you should talk to your loved one about whether they want to have a do not resuscitate order (DNR) and what types of lifesaving care they would want. That way, when you must make medical decisions for them, you’ll be able to follow their wishes.
2. Ask your loved one what type of care they will want in the future
“We know at some point outside care will be needed because as dementia progresses, the person’s cognition and functional abilities decline,” Nisson said. “When problems with gait and daily activities and behavioral changes arise, additional care will likely be needed either in the home or in a care facility.”
Older adult care typically begins with the least restrictive level of care. Then, your family member can increase care if needed. Types of care include:
- In-home care provided by family, friends, volunteer programs or in-home care agencies
- Adult day health programs where people with Alzheimer’s or dementia can receive care and participate in activities, typically on weekdays
- Assisted living homes, where up to 10 older adults may receive care
- Assisted living centers, larger facilities that care for 11 or more residents
- Assisted living memory care, which is dedicated to people with Alzheimer’s or related dementias and often has a secured setting
- Nursing homes, which provide medical and nursing care for many residents and conditions
3. Discuss costs and insurance coverage
Long-term care can be expensive, so it’s crucial to figure out how to pay for dementia care. Research the costs for in-home care, adult day programs and assisted living in your area. Assess whether your family member has savings, long-term care insurance or veterans’ benefits and if so, find out how to access them. Look into your state’s long-term care Medicaid plan requirements in case you need them in the future. Note that Medicare plans do not cover the cost of in-home caregivers or assisted living placements.
4. Connect with support
There are many places you can go to learn more about Alzheimer’s and related dementias. Banner Alzheimer’s Institute (BAI) provides a free program, Planning Ahead, to help you prepare for medical, legal and financial decisions, along with how to pay for care in the home, community and residential settings. You can participate live or watch the online version. “The best time to plan is early in the disease when your loved one can participate in the conversation,” Nisson said.
You can learn more by listening to BAI’s Dementia Untangled podcast. The episode called Now Is the Time to Make a Plan can give you more details about how to have these difficult conversations with a person with dementia and what to cover in them.
You can also contact your local Alzheimer’s Association chapter or Area Agency on Aging. These organizations provide helplines, support, education and resources that can help you manage care for your family while balancing your own wellness while connecting you with caregiver support programs. The Arizona End of Life Care Partnership also offers tools, programs and resources for having difficult conversations.
The bottom line
When your parent or loved one is diagnosed with Alzheimer’s disease or related dementia, you’ll face a range of decisions. Having a series of conversations can help you come to an understanding about what your loved one prefers and can afford. Visit the Banner Alzheimer’s Institute website for more resources for caring for people with Alzheimer’s disease or another dementia.