Cognitive Decline: Act Sooner, Not Later!

Families with a loved one experiencing cognitive decline are often slow to recognize and respond to the signs. This is understandable… the information is new and they may not yet be ready to accept what is happening. As a result, they make several common mistakes, thereby missing the opportunity to achieve outcomes that are in the best interests of their loved one and the family.

We counsel many families in this situation. Here is what we advise…

#1. Seek an Evaluation Immediately

Once cognitive changes are noticed, it’s important to establish a baseline of functional abilities by means of a professional evaluation. This is the most reliable way to measure progression over time.

An evaluation generally begins with a cognitive assessment in a primary care setting. If issues are identified utilizing objective and measurable in-office testing, additional neuro-psychological testing and specialist care is recommended to reach a more conclusive diagnosis and develop a treatment plan and roadmap.

It’s important to remember that a change in behavior may be the result of a medical issue, such as an underlying infection or vitamin deficiency. In those situations, when appropriate treatment is implemented and cognition improves, we all breathe a sigh of relief.

#2. Don’t Ignore the Problem

One mistake I repeatedly see families making is relegating a change in cognition to “normal aging” and thus not acting soon enough (if at all). However, delayed action may forgo the opportunity for early interventions that can slow the rate of progression, thereby promoting the best quality of life possible given the situation.

Sometimes, families are simply in denial. They may not have the energy or time to devote to the problem, or the relationship with the family member with cognitive decline may already be fraught with tension. In these circumstances, it may take a traumatic fall, a call from a concerned neighbor, or even police involvement before any action is taken.

In other cases, families face strong resistance from their loved one, often resulting in angry conversations. This may be due to a complete lack of awareness on the part of the person with cognitive issues, but more often, it is simply a fear of losing control. 

Each of these situations can be difficult. Still, as the caregiver, you must find a way to overcome these barriers through education, grit, and perseverance.

#3. Talk About the Condition

Even in circumstances that are warm and supportive and in which appropriate actions are taken to achieve a diagnosis, families are often reluctant to talk with one another about the condition. They may be in denial or simply fear upsetting the person experiencing cognitive decline.

One helpful tip is to name the condition. For example, one of our client families calls it “memory issues.” Naming helps to normalize the situation and provide a framework within which the family can plan together.

Now, when the loved one asks questions — Why am I seeing this physician? Why am I taking this medication? Why don’t you want me to drive? Why can’t I stay alone? Etc. — the family can respond simply and consistently: “You have some memory issues that the doctor has identified and we want to keep you safe and healthy.”

Said often enough and matter of fact, the loved one will usually respond by saying something like, “Oh, that’s right, I have some memory issues.”

#4. Don’t Wait Too Long to Initiate Outside Help at Home 

Once a diagnosis is made, families often commit to caring for their loved one at home for the rest of their lives. This is admirable, and a goal we completely support. However, one person doing all the caregiving may not be sustainable. 

As cognition declines and more care is needed, it may be beyond the capacity of the caregiver, especially if there is no opportunity to take regular breaks and conduct the business of life. The caregiver may even inadvertently sabotage their goal of keeping their loved one at home if they themselves become ill or suffer a crisis.

A better approach is to integrate regular schedule in which someone else takes caregiving responsibility for set periods of time during the day or week. Having someone else in the home can become normalized if it is part of a routine — routine is key! Adult day health programsare very helpful in these situations as well.

#5. Don’t Wait Too Long to Identify Alternative Living Communities

Families often fail to realize that at some point, an alternative living community may be the only option. Although it is difficult to say, I often find myself explaining that things are not going to get better. 

By investigating available services and researching communities early on, caregivers can evaluate settings based on defined criteria, some of which may have greater priority than others. 

We suggest a systematic approach in which criteria are outlined and weighted in terms of importance so that settings can be rated and evaluated quantitatively and top choices identified. 

#6. Care for the Caregiver

We worry about the caregiver as much as the loved one experiencing the cognitive change. They may find themselves overburdened, resentful, and even ill. If something happens to them, there may be no one else available to step in, at which point a rushed, unplanned transition to an alternative living community may be the only option. 

Such situations are traumatic for everyone and result in decisions being made quickly, disallowing the opportunity for the due diligence necessary to identify an optimal setting.

Plan Now for the Future 

As the baby boomer population ages, the total number of people with Dementia is expected to rise. If current trends continue, more than 9 million Americans will have dementia by 2030 and nearly 12 million by 2040. 

By looking ahead at the trajectory of a loved one’s decline and taking proactive steps to set goals and manage change, families can reduce suffering, prevent unnecessary crises, and promote the best quality of life possible for those experiencing cognitive decline and their caregivers.