As the country gets older, the mounting problem of dementia will only get more prominent. Already the sixth leading cause of death in the country, and the only killer among the top 10 that is completely unpreventable, the Alzheimer’s Association predicts that, by the year 2050, Americans will spend over one trillion dollars on treatment for dementia, five times the current price tag. For those of us whose loved ones suffer from the disease, it’s a trial every day. We can’t do anything about the emotional or physical toll the disease takes on loved ones and caregivers, but the devastating financial costs can be mitigated with a combination of planning, transparency and teamwork.
Q: I think one of my parents is showing signs of dementia. What can I do now, before the symptoms get worse?
A: Because dementia is a group of symptoms, rather than a specific disease, early identification is important, but a full diagnosis may be far off. Those early days of uncertainty, in which the good days outnumber the bad, can be very tough. Even if it’s difficult, though, taking decisive action early on is very important.
The first step is to assemble a team of loved ones and caregivers. Unfortunately, this can be tougher than it sounds. The sufferers of many diseases can readily identify their own symptoms, but one of the warning signs of dementia is forgetting things and also not realizing that they’re being forgotten. What that means is that the sufferer of dementia is an unreliable advocate on their own behalf. It also means that, if they deny their problems, other family members may take their side in a misguided effort to show affection and solidarity. Among the most likely culprits is the sufferer’s spouse, who has likely been shouldering an increasing load to compensate for the sufferer’s worsening mental condition. Still, anyone who might be able to help should be made part of the early planning. Also consider bringing in those who won’t help, but who have the ability to derail your plans, either through gossip and complaints or legal challenges.
If you are your parents’ primary caregiver, you will be spending their money. Someone in the family will resent that. Be prepared.
Q: Okay, so what do I do once I’ve assembled my team of loved ones?
A: You need to sort out several aspects of caregiving. If they have a will or living will, see if you can read it. Find as many answers as possible before you have the meeting. Talk to a lawyer. Talk to your parents’ financial institutions and then come talk to us. You’re going to need to find all of their money. Maybe you’re very lucky and your loved one has left a detailed accounting of their finances. Most likely, though, you’ll need to get legal recognition as the primary caregiver or receive power of attorney before you can access the accounts. You may not be able to do so before the family meeting. Do your best.
Use the family meeting to make plans. Who’s going to pay for what? What happens if the sufferer needs home care? Will your parent go to a nursing home? Will you bring in a nurse? Will he or she move in with you or one of your siblings? Bear in mind that planning at this stage is more about transparency, openness, and validating everyone’s feelings. Few of the best laid plans made today will actually be followed. That’s fine. Flexibility is important and so is teamwork. Listening to others’ needs at this meeting will go a long way toward building trust when you need to make a financial decision with your parents’ money down the road.
Q: Is there anything I can do to help?