Dementia Care and Families

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Our colleague Anne Jacoby attended a presentation and book signing with Thomas Harrison and Brent P. Forrester, MD, authors of, “The Complete Family Guide to Dementia: Everything You Need To Know To Help Your Parent and Yourself.”

Anne and I have already recommended the book to clients and others. It is thoughtfully written and comprehensive, and fully acknowledges the central role of the caregiver and/or care partner in caring for someone with dementia.

We were also incredibly fortunate because Tom and Brent agreed to be interviewed by Anne. Today’s newsletter includes excerpts from that conversation and suggestions for managing this heartbreaking disease.

— Dianne Savastano

An obvious place to begin the interview was to ask the authors what prompted them to write the book in the first place.

Tom: For many years, I cared for my mother with dementia. However, there were no books practically written for family caregivers and no books with empathy that didn’t treat the caregiver as an “employee.” 

Dementia is a family disease. If you’re a caregiver for someone with dementia, you’re suffering too and in crisis. We don’t do enough for people with dementia, but we don’t do anywhere close enough for caregivers. This is a difficult situation, and we wrote the book to provide a roadmap on how to cope.

Brent: The medical community isn’t yet well equipped to care for people with dementia and what these patients are going through. And because of ageism and stigma, they often don’t feel comfortable discussing it or will refer the conversation to someone else. Engaging caregivers requires a redesign of healthcare similar to the holistic model provided by cancer care that includes screening, planning, and end-of-life care.

From there, we tackled some of the most critical questions about dementia care. What follows is a synopsis of Tom and Brent’s responses…

“What is the biggest mistake family members make?” 

In short, many families wait too long. For any number of reasons, family members may not acknowledge — or even realize — that cognitive decline is occurring.

  • Lack of urgency. Unlike a heart attack or cancer, the cognitive changes of dementia are not accompanied by a “grand announcement.” The decline can be so slow as to be nearly invisible.
  • Picking up the slack. It’s natural for family members to step in, pay bills, or handle other tasks. This further delays a conscious acknowledgement of dementia.
  • Use of cues. The individual experiencing cognitive changes may use cues and tools (i.e., post-it notes) to navigate daily tasks when none were previously required.
  • “Cheating” the test. We have seen some clients practice for memory tests! This can prevent doctors and others from making a true assessment of a person’s capabilities.
  • Denial. A loved one may intentionally try to hide the cognitive issues because of fear or a perceived stigma around the disease.
  • Confusing dementia symptoms/issues with normal aging.

“How does one tell the difference between normal aging and dementia?”

With aging, it normally takes longer to process information and remember things. With dementia, there is no storage of new information. There may even be denial or minimization of issues associated with memory loss and thinking ability.

With dementia, people forget in telltale ways. Whereas in the past they may have had trouble finding their keys, with dementia, they routinely put them in the refrigerator. Or, instead of simply taking more time to remember a person’s name, they can’t remember the name of someone they may have known for 20 years.

“What are the best steps families can take if they suspect cognitive issues with their loved ones?”

The key is proactive and creative planning — for both your loved one and yourself.

For Your Loved One…

A Full Medical Examination.

The place to start is to know what you’re dealing with. Otherwise, you have no roadmap to follow. 

Could the symptoms be attributed to a treatable condition, such as an infection (especially a urinary tract infection), vitamin deficiency, side effects from medications, irregular sleeping patterns and/or a brain tumor?

[Dianne and I have found that if our client is having difficulty accepting that there is a cognitive issue, it can be incredibly helpful to share our concerns with the PCP prior to the visit.]

A Review of Financial and Legal Documents

Proactive planning with your loved one’s attorney can be especially important, so that they can be involved in the decision making. If your parents serve as each other’s healthcare proxy (HCP), it is especially important to reassess their ability to assume this legal responsibility.

A Driving Assessment

Brent: This is an emotionally challenging area because of the potential loss of independence. It’s also important to be aware that each State deals with this issue differently, with most States not requiring doctors to report unsafe driving. There are opportunities to have an objective assessment done if you suspect this may be the case. I don’t mind being the “bad guy” in conveying the news that safe driving is now a concern and that your loved one should no longer be on the road.

Tom: Early conversations may again be so helpful in preparing the way. I asked my mother if she could not drive, how would she want to get around. When she failed the driving test, she simply told people that the car failed the safety inspection.

Alternative Living Arrangements

Moving is stressful and can often prompt depression. With your loved one, an initial decline following the move is to be expected, because regardless of planning, it is a difficult transition. If you wait too long, it can be especially tough.

This can also be emotionally distressing and even disorienting for the caregiver because this involves a huge reduction in the amount of required involvement — their role has become a part of their identity. Or, the caregiver may be concerned that, “I’m giving up. It’s hopeless. I failed them because I promised I’d never put them in a facility.”

For Yourself…

In their book, Brent and Tom also talk about proactively planning for yourself as the caregiver. This will give you a sense of orientation, purpose, and efficiency and help you be proactive in taking care of your loved one. A good plan includes these elements:

Accept that your relationship will be forever changed.

Dementia will fundamentally alter the nature of the connection between you and your loved one. The roles are now reversed, as the child must assume the role of responsible adult. 

Acceptance of the dementia diagnosis can be very constructive, as it allows one to begin looking for what can be positive and loving in the context of a new relationship.

Think proactively about future issues and how you will cope with them should they occur.

In addition to the loss of driving privileges or transitioning to a facility, take time to consider how you will assist with personal care and tasks; manage your emotions if difficult behaviors manifest, and how you can best honor end-of-life wishes of your loved one.

Consider what will happen when you can no longer take care of your parent yourself.

Tom has already articulated his personal thoughts regarding this component of proactive planning.

Dianne and I also offer strategic services to provide guidance when this happens. Most clients begin by bringing care into the home and we help them hire and train personnel. Such resources can be combined with an adult day health program. Eventually, residential services in an assisted living facility or a long-term care facility that specializes in memory care becomes the only alternative.

Accept that you must take care of yourself as well. 

As the authors describe it, “Put on your own oxygen mask first.” 

For busy families, this advice, while useful, can feel like they are being asked to do one more thing, thus increasing their stress. We try to be practical by first identifying activities that replenish the caregiver and then developing a concrete schedule to make them happen regularly. For some, it can be as simple as taking a daily walk with a friend or having a night off for social activity. For others, it may be taking many days away for a vacation. With creative planning, time can be carved out and we find it results in both a smarter and more energized caregiver.

Final Thoughts 

Since we are both caregivers for loved ones with cognitive issues, Dianne and I were especially grateful to Dr. Brent Forester and Tom Harrison for combining phenomenal expertise, passion, and commitment in writing a book that is comprehensive, practical, reassuring, and hopeful. 

Thanks to them both for spending time with me and the reminder to treasure the memories that happen every day.