Preparing for possible cognitive decline: the difficult conversation
Not everyone is destined to get Alzheimer’s disease or another form of dementia, but unfortunately, some of us will. The good news is that 47.8 million Americans age 65 and over will be Alzheimer’s free… but the bad news is that 5.6 million in the same age group will develop the disease. And the older you are, the odds become even greater. 3% of those 65-74, 17% of those ages 75-84 and 32% of those age 85 and over will develop a disease of the brain.1
We can all hope that our brains will stay healthy into our 60s, 70s, and beyond but the problem is that no one can be certain. Planning for possible cognitive impairment, no matter what the odds, is so important, but it is one of the most difficult topics to talk about. Studies find that Alzheimer’s is one of the most feared diseases, along with cancer.2
The aging brain: What’s normal, what’s disease-related?
Our brains do change with age, and there are some normal declines in learning and memory that occur. However, it’s important to distinguish normal brain aging from diseases of the brain. For most of us, fluid intelligence—the capacity to process novel information and newly learned knowledge, and our ability to solve puzzles and memorize lists—declines with age, with the greatest declines after age 70. That isn’t as important as Crystallized intelligence—intelligence based on the skills and strategies learned over lifetime—which remains stable well into the 60s and for many, can improve into the 70s and beyond.. The majority of us will have healthy brains throughout our lives and thanks to variations in memory and learning ability, may be finishing off crossword puzzles and managing spreadsheets well in our 80s and 90s. New research indicates that diet, continued learning and other factors can help to keep a normal brain healthy. We often worry that we may be getting Alzheimer’s disease when we sometimes forget everyday things, like misplacing an item or neglecting to pay a bill. That’s a normal change and nothing to be concerned about. On the other hand, changes in behavior, difficulty carrying on a conversation, conceptual confusion and consistently missing appointments might point to something more serious. The inability to manage money is another red flag for it is one of the first skills to be lost by someone with a disease of the brain.
Here are some of the warning signs.
Early Warning Signs of Dementia
- Difficulty finding the right words
- Changes in mood or personality
- Difficulty completing familiar tasks
- Confusion with time or place
- Apathy and withdrawal from activities
- Difficulty following story lines
- Failing sense of direction
- Being repetitive
- Struggling to adapt to change
Impact on families and family caregivers
Whether we think we will develop Alzheimer’s or not, we do need to prepare for it. The reason is simple. It’s not only about the individual who develops the disease, it’s also about the huge impact it has on the entire family—spouse, children, siblings and even grandchildren. With growing evidence that sports injuries may result in early- onset dementia, even families at younger ages can be impacted too. Family members provide the lion’s share of care, and fall into that role willingly. But caregiving takes its toll emotionally, physically and financially.
Here are some startling statistics about caregiving for someone with severe cognitive impairment. 16.1 million Americans are caring for a person with Alzheimer’s disease. They put in 18.4 billion hours, adding up to $282 billion worth of care.3 There are many heartbreaking stories behind the facts and figures. Many caregivers are adult children in the 40s and 50s and are the ones to discover that Dad hasn’t paid bills for a while, or that Mom has gotten lost several times when driving home. To recognize that a parent—someone who took care of you when you were a child—is now unable to care for him/her self is one of the saddest and most emotionally trying life events. It also calls for action, and most people don’t know what to do or where to turn. And because the parent is already showing symptoms of cognitive impairment, the decisions are left to the family caregivers if they haven’t been made in advance.
Solutions aren’t easy. “Is Mom able to live alone anymore?” “Should I look for someone to come into her house? “Where do I find an honest person to do that?” “How much will this cost and has money been set aside for these contingencies?” “Has anyone tried to take advantage of her financially?” Most caregivers are employed, which compounds the problem as they juggle the demands of their job and family, and their new role as a protector of their parent.
If both spouses are living, the well spouse (most often a woman) is usually the one who becomes the primary caregiver, often to the detriment of her own health. She is the one who observes the steady decline of function of their partner and the one to provide day-to-day care. For early-onset dementia, a spouse may be in an even more precarious situation with mortgages or college tuition to pay and decisions to be made about a lifetime of illness that occurred earlier than anticipated.
Long-term care planning and dementia: Don’t wait
Having a conversation about what might happen if a family member or a client develops Alzheimer’s or other type of dementia well in advance of any symptoms seems like a “no brainer.” However, it usually doesn’t happen. We just don’t like to think about it. It isn’t easy but this is a disease that can derail even the best financial plan. And the hidden and real cost is the derailment of the lives of the people we love the most—our spouse, our children and others who ultimately will provide the care. Families will always be there to help and provide support. Early conversations about long-term care can ease their way during difficult times.