When a spouse or parent begins showing signs of dementia – such as forgetfulness, uncharacteristic behavior, irrational thinking, or confusion – meeting that person’s care needs and keeping them safe is usually the first concern.  Family members may pitch in as caregivers so the person isn’t left alone and unsafe.  They may schedule medical evaluations to get a diagnosis and treatment.  A spouse or adult child may start to think about how to keep the person with dementia at home as long as possible, or they might consider moving them in with a family member who can provide ongoing care.

The health and safety of the person with dementia should be a top priority.  But there is another set of concerns that should also be addressed early on, before the disease progresses further:  legal planning.  If the person with dementia doesn’t have a legal plan in place, or if it is outdated, this is a critical time to get the right plan in place.

Why divert time and energy away from care to talk about legal documents?  Legal planning directly impacts care, and the least costly time to do it is while the person with dementia still has capacity to sign legal documents.  As the disease progresses and impacts cognition, the person’s legal right to sign new documents diminishes.  But in the early stages, it may still be possible for the person to make their own decisions about who they want to name in their documents and what decisions may be made on their behalf.

What needs to go into the legal plan?  That depends on the person and their family’s unique circumstances and should be determined with assistance from a qualified elder law attorney.  But broadly speaking, the person needs a comprehensive estate plan to cover not only the transfer of assets after their death, but also – and perhaps more importantly – who will have decision-making responsibilities during their life, and what kind of care they do (and don’t) want to receive.

Powers of Attorney enable family members, friends, or others chosen by the person to make financial or health care decisions on their behalf.  These documents are critically important because the person with dementia will gradually become less able to make sound financial and health care decisions.  Frequently people with dementia get in the way of their own care because the disease renders them unable to think rationally and solve problems.  If they haven’t signed Powers of Attorney naming someone else to handle their financial and health care matters, then no one else can readily step into the decision-making role.  The family may not have the legal ability to establish the ideal care environment or to pay for care the person desperately needs.  There is an alternative to Powers of Attorney if the person’s dementia is already too advanced – a court process called Conservatorship.  But Conservatorship is a more expensive and sometimes contentious approach and should be considered a last resort.

Other legal documents, called Advance Directives, establish a record of the medical treatments the person does or doesn’t want to receive.  These documents guide family members and doctors and help take the guesswork out of medical decision-making.  Without any form of Advance Directive in place, family members may struggle through difficult decisions about feeding tubes and other forms of life support, wondering if they are doing what their loved one would want.  In the ideal situation, the person with dementia will document those decisions before the disease progresses so that the family can act in their best interest.

Legal planning before the onset of dementia or very soon after symptoms appear is essential to ensure that the person receives the right care and that his or her wishes are respected during life.  If you know someone with dementia or their family member, ask them if they have a legal plan in place.  Sometimes folks don’t know what they need until it’s too late to take the path of least resistance.  You can help by encouraging them to start early and work with an elder law attorney who will tailor the plan to meet their unique needs.