Difficult Conversations: When Dementia Strikes
Communicating when with your loved ones is crucial to planning care well. Ideally, difficult conversations with an elder whose skills may be declining occur when the person is still clear-minded enough to reason. That is always best. If that does not happen, however, you may reach a point where you must act more independently, because Alzheimer’s disease and related dementia (ADRD) has compromised your loved one’s ability to choose wisely.
This can be thorny territory, because by the time Alzheimer’s or other dementia interferes with reasoning ability, elders are by definition at risk of making decisions that put them in danger they do not recognize.
It is important to remember that advanced age and even the appearance of dementia are not a license to remove all sense of independence from the elder, but the family must be willing to act to ensure safety. And as difficult as it is, understand that you may have to act over the strenuous objections of a parent to keep him or her safe. That can be emotionally difficult even within the best of relationships. When parents have been capable, loved, respected (or even feared) for 50 years, the impact of having to step in and make decisions over their objections is jarring. This leads us to recommend the following guidelines:
1. Elder safety trumps other concerns.
You might use the analogy of a swimming pool in the backyard of a house where children live: despite their objections, you must have a fence around the pool. The absence of a disaster so far is no guarantee against tragedy tomorrow.
2: Cognitive and other assessments provide helpful baselines and determine capabilities.
This may be as simple as a reflex or eyesight test to confirm someone’s fitness to drive; in more extreme cases, it may mean a neurological test to diagnose dementia. If Mom cannot easily recall that she lives in suburban Boston, for example, that's a clear sign of decline. A geriatric care manager (GCM) can often administer a simple cognitive evaluation in the comfort of the elder’s home, and can be the non-family expert offering recommendations. An expert’s assessment may reduce your concern that you do not see the situation clearly.
Once dementia inhibits reasoning ability, it is no longer appropriate to allow people to make risky choices. Most often that person would have said, when competent, that someone should step in if necessary. You may need to take that step now.
3. Introduce small changes the home care environment after larger events
If someone returns home from a hospital stay, send a caregiver as part of the after-care team and simply keep the person coming. If a home or car repair is required (or can be staged), let that be the time the car finally gave up the ghost or the stove stopped working. Remember that emotional life for Alzheimer's patients is usually still quite vivid.
To the maximum extent possible, honor and support a person’s sense of self. To smooth the flow, many experts recommend white lies — “fiblets” — to reduce the friction. If your loved one is unsafe alone and a home caregiver is needed, perhaps she or he can be presented as help for a busy spouse or other family member. If the gas stove has been left on too often, perhaps turning off the gas in the basement and then announcing that, “the stove doesn’t work” can avoid a conflict and keep the person safe without saying something that the person would find humiliating. Deflect, if necessary and possible, requests for repairs by saying things like “I called and they say they can fix it. I’ll talk to them again next week.” Such prevarications would not be appropriate in dealing with a competent person, but your relationship changes as your loved one progresses through dementia.
These fiblets often feel unethical and uncaring, but in the service of keeping someone safe, they are not. A direct statement such as, “We love you but you are unsafe alone because you might wander into traffic” will likely be humiliating or frightening and may be countered by vociferous argument. If the person cannot reason independently, do not try to have a conversation that requires independent reasoning.
5. Relax, do your best, and go easy on yourself.
Nearly all of us hope that in our parents’ last years, they feel well served by our care, and know we have done our best. We want their gratitude and their understanding. The tragedy of dementia is that it sometimes robs families of that experience. If you face such a situation, there are ways to mitigate its impact, but dementia is progressive and irreversible. If someone is unsafe and you await approval to take the action required, you are likely to allow risks to escalate far past the point of prudence. In this difficult passage of life, prepare yourself to act even if your motives will never be appreciated.