Many of us have experienced the heartbreak of watching a loved one's memory and connection with family and friends slip away. Today, an estimated 6.7 million Americans suﬀer from Alzheimer's disease, and experts expect that number to increase rapidly as the baby boomer generation ages.*
"Alzheimer's disease is a leading cause of death in the US and the number of people living with the disease is expected to grow because of the large increase in the number of adults age 65 and over, the age group that is at increased risk of Alzheimer’s," says Monica Moreno, senior director, care and support at the Chicago-based Alzheimer's Association. "One in 9 individuals over the age of 65 and one in three seniors dies with Alzheimer’s or another form of dementia."
Alzheimer's is one of the main forms of dementia, which involves impaired brain function, the loss of short-term memory, and trouble completing even basic, familiar daily tasks. Caring for family members with this disease can take an emotional as well as ﬁnancial toll on families. Arranging for the care of a person suﬀering from dementia can be complex and expensive. Adding to that complexity, patients are often unable to manage or understand their ﬁnances.
What can families do? Although there is no cure for these types of illnesses, there are steps you can take now to reduce the impact of dementia on those aﬀected. To the degree families are able to acknowledge the signs of a progressive disease early, they can begin to align around the emotional realities and impact on the family. “Be empathetic to the fears of those most directly affected and remember that fear is behind the antagonistic behavior we sometimes experience," says Dr. Timothy Habbershon, managing director of the Fidelity Center for Family Engagement. "Be 'caringly bold' to establish family dialogue around all aspects of the disease process. And talk through family member roles and what partnership help you might need.”
When is a change a sign of dementia?
When a loved one shows signs of a change in judgment or memory, the ﬁrst step is to determine whether it's a normal sign of aging or something else. Many of us will experience some type of cognitive impairment as we age. Indeed, many older people ﬁnd their short-term memory is less sharp, and it's more diﬃcult to multitask (see table below).
|Signs of Alzheimer's/dementia
|Typical age-related changes
|Poor judgment and decision-making
|Making a bad decision once in a while
|Inability to manage a budget
|Missing a monthly payment
|Losing track of the date or the season
|Forgetting which day it is and remembering it later
|Difficulty having a conversation
|Sometimes forgetting which word to use
|Misplacing things often and being unable to retrace steps to find them
|Losing things from time to time
|Source: Alzheimer's Association.
Losses in memory, attention, or problem-solving ability aren't necessarily signs of dementia. So how can you tell whether these cognitive changes are more serious? The Alzheimer's Association, a national care, support, and research organization, oﬀers 10 Early Signs and Symptoms of Alzheimer's. They include looking for personality and mood changes, decreased or poor judgment, and confusion with time or place.
Regular check-ins and conversations with your loved one also can help identify problems early. Look for changes in their normal routine. Piles of unopened mail and unpaid bills may be a sign that something's wrong. You can also encourage your loved one to take you to an appointment with their primary care doctor so you can better determine whether there's been any change in their health or adjustments to prescriptions.
Trusted professionals such as ﬁnancial advisors or accountants may be in a position to notice changes in long-time clients. For example, reviewing assets and investments may be diﬃcult to do for someone with a cognitive impairment.
Medical professionals play an important role in determining whether cognitive issues are early signs of dementia or are simply normal signs of aging. Specialists such as geriatricians and neurologists have expertise in identifying dementia, including Alzheimer's.
“The caregiving needs for someone living with Alzheimer’s are extensive and increase over time,” Moreno says. “On average, people live 4 to 8 years following a diagnosis, yet some can live up to 20 years.”
Habbershon suggests that staying "in relationship" with family members is key to coping with care requirements. He emphasizes aligning around guiding principles in advance, including how you will engage during emotionally charged times.
Consider using the skill of "processing out loud," which involves vocalizing what you are feeling and connecting it to thoughts in a way that creates congruence. For example, you might say: "I am feeling a lot of fear around the uncertainties of this new life stage and I know it will strain our relationships. Let’s commit to staying open and connecting with each other.”
Habbershon adds that it’s equally important for individuals and families to show compassion toward themselves. Emotions can range from sad to crushed, to fear and anger. And sometimes family members will be at a loss, stressed, overwhelmed, or wanting to escape. "All of those realities are normal, and the family needs to openly acknowledge them and talk about their shared experiences,” he says.
When it comes to planning for health care expenses, people may want to work with their ﬁnancial advisor to determine Long-term care insurance coverage options if available, Moreno says, adding that’s particularly important as Medicare does not pay for long-term care, and you can't be admitted into a skilled nursing facility just because you've been diagnosed with Alzheimer’s. And if you have a family history of this brain disease, additional coverage may provide access to a better facility or more comprehensive treatment options. Some policies may cover home health care, but many do not, so do your homework.
“It is important to plan as early as possible for your financial needs during the course of Alzheimer's disease,” Moreno says. “You'll need to consider all the costs you might face now and in the future. Since Alzheimer's is a progressive disease, the type and level of care needed will intensify over time.”
Moreno concludes that while new and better treatments are urgently needed, progress is being made, including 2 FDA-approved therapies that treat one underlying cause of Alzheimer’s. Additional clinical trials are underway and may offer hope of more treatments. In the meantime, early detection and diagnosis are even more critical to ensure individuals receive the most benefit at the earliest point possible.
“As research evolves, making lifestyle changes may be able to reduce your risk of cognitive decline,” Moreno says. “There is strong evidence that combining physical activity, healthy nutrition, social experiences, intellectual challenges, and improved self-management of medical conditions can protect cognitive function in older adults who are at increased risk for cognitive decline.”
Tip: Call the Alzheimer's Association 24-hour help line at 800-272-3900 or visit www.ALZ.org to tap into a variety of caregiver and family resources.
Start talking early
Conversations about aging can be diﬃcult, but they're also critically important—particularly from a ﬁnancial perspective. For instance, if a loved one is suﬀering from some sort of cognitive impairment, it may be very diﬃcult to protect their ﬁnances if estate planning tools such as powers of attorney aren't already in place. If you do not have your family estate plans in place, Habbershon suggests you seek a financial planner and attorney who know how to help you talk about your wishes and fears and who have the skills to draw your family into the planning process. "Striving for transparency within the family is critical to avoiding future conflict," he says.
Unfortunately, if a loved one's disease progresses and their ability to think and share thoughts declines, it will become more diﬃcult for your loved one to express their wishes. And yet, knowing those wishes will be a critical guide to help you through the many decisions that you may have to make.
"Most people feel they have all the time in the world to have these conversations," says Harriet Warshaw, advisor to The Conversation Project, a Massachusetts-based nonproﬁt dedicated to helping people talk about their wishes for end-of-life care. "Yet we know that life is unpredictable; stuﬀ happens. So we recommend you have the discussion about end-of-life care early. Gather your family members together to hear what matters most to your loved ones—all at the same time."
Here are some tips for starting conversations related to aging and cognitive decline:
- Keep it low key. Talk with your aging parents or spouse in a quiet atmosphere without a lot of visual stimulation. Avoid talking about these issues over dinner at a noisy restaurant or at the airport. Instead, ﬁnd a quiet time at home to start the discussion.
- Choose your words carefully. The language you use makes a diﬀerence. Convey your concern for the individual. Don't make the person feel overwhelmed or browbeaten. Oﬀer to help by partnering with them.
- Be specific. If you're concerned about a loved one's cognitive decline, try to cite speciﬁc examples of times you noticed it. Perhaps your parent or spouse forgot their brother's name, or couldn't remember the name of the bank they use.
- Keep the discussion focused. Go into the conversation with a solid agenda and, if possible, agreement among other family members about how to handle the situation. Meet with your siblings and other family members in advance to discuss long-term care options and other strategies to make sure you are all on the same page.
Tip: Remember this is not just one discussion. It is a series of conversations in which the content may change over time. For ways to begin the conversation with your loved ones, read Your Conversation Starter Kit (PDF).
Warning signs to watch for
Adult children's engagement in their parents' ﬁnancial aﬀairs typically ramps up in response to age and changes in health and mobility. Parents' ability to remain independent erodes in their 70s. There are 3 "tipping points" that adult children should be aware of that may signal the need to step in and get involved in a more direct fashion with the ﬁnances:
- When a parent or loved one makes a direct request for help managing their ﬁnances or expresses that they are feeling overwhelmed by the task.
- When age starts to become a signiﬁcant factor (on average when parents are in their 70s) and you are not engaged in their daily lives or aware of their financial realities.
- When there are hints or awareness of a change in circumstances and family members are not sure how to evaluate them.
The fear of moving from independence to dependence can create defensive, secretive, and even combative behaviors, according to Habbershon. He points out that when normal life-stage fears are combined with the onset of dementia, these behaviors can intensify. Families that can proactively co-create what an interdependent life looks like can lessen some of the uncertainties around aging. Habbershon describes the mindset of interdependence as one of "dependent humility." Ironically, when we acknowledge that it is OK to be dependent on one another, we can learn to live more interdependently. The aging journey requires us to reflect on our diminishing capacity and normalize the need for more assistance. "Embracing this humble mindset can help lessen some of our fear-based defenses and set us up for more interdependent living around everything from arthritis to the daunting family experience of dementia," he says.
Here are 5 practical expressions of interdependent families:
- Establish financial transparency and discuss beneficiaries on bank accounts, investments, insurance policies, etc.
- Ensure that your will is current and complete and share it with impacted people.
- Discuss health care wishes as a family and decide who the health care proxy will be. This is the person who will make decisions for you if you can't and should be separate from the person who serves as your patient or health care advocate.
- Create a living will as part of a larger "wish" discussion. This aligns family or caregivers around instructions on the kinds of care you want to receive.
- Scan and store your legal documents, including passwords and a list of trusted advisors (e.g., ﬁnancial advisor, attorney, CPA) and share with your loved ones.
Read Viewpoints on Fidelity.com: How long-term care planning can help your loved ones