Expert Interview: How to live better with a loved one with Alzheimer's disease?

Hello Benoît Michel, thank you for accepting to answer our questions.  

Can you first tell us about your background? What led you to study/work with Alzheimer's disease? 

I have a degree in clinical psychology from the University of Aix-Marseille, with a specialization in neuropsychology. It was during my studies that I discovered the world of gerontology and neurodegenerative diseases such as Alzheimer's disease. I was lucky enough to meet Faustine Viailly, a psychologist specialized in gerontology, who trained me in a special clinic with the elderly and made me want to continue working with them.  

Since then, I have been working mainly in EHPADs (French "etablissement d'hébergement pour personnes âgées dépendantes", or retirement homes) as well as in the adult psychiatry department of the University Hospitals of Marseille.  

What kind of mental or psychological impact does Alzheimer's disease have on patients? 

To put it simply, Alzheimer's disease progressively destroys the brain's neurons, leading to the disruption of cognitive functions: memory in the first place, but also language, etc. As a result, symptoms appear, which are increasingly visible and noticeable, and increasingly incapacitating (forgetfulness, difficulty recognizing people, places, using objects, issues word-finding, disorientation, etc.). 

All this is obviously extremely disabling, but I believe that the real impact of the disease is seen at another level: Alzheimer's disease is a disease of connections, the connection between the patient and the world around him or her, to his or her family, friends, and even to society. The symptoms will disrupt these connections by undermining all those obvious things that make up our interpersonal relationships: conversations and plans, shared moments and memories, what we know about each other, our tastes, our personality traits, our habits towards each other, etc. 

All this is either hindered by the Alzheimer's ("How can we have conversations? He immediately forgets what I tell him, or I don't understand when he talks"), or is "erased" by it ("She doesn't remember what we've experienced together before") or is altered by it ("He has never done such things before!"). And on top of this comes dependency, which also disrupts the connection with our loved one ("I was his wife, now I'm also his nurse"). 

In Alzheimer's disease and related disorders, we have the impression that the person no longer recognizes us, and, at the same time, we also have a hard time recognizing them: this is where our relationship with them is altered, and this is the real impact of the disease.

Fortunately, we realize that, even if the Alzheimer's disrupts the relationship, it is still possible to maintain a connection with the person, even when the illness is very advanced. The symptoms impose changes and adaptations, it is true, and the relationship is certainly different, but it is still possible! I think this is a very important message to convey and, more than treatments to slow down the disease or calm the symptoms, it is on this patient-caregiver relationship that our interventions must focus and that they are most beneficial in the end: more than maintaining cognitive abilities at all costs, which are destined to decline anyway, it is better to work on maintaining this relationship in spite of the changes.

What are the main problems that caregivers face when caring for a relative with Alzheimer's disease? 

They are of several kinds and obviously vary greatly from one person to another.

First of all, there is the fatigue and exhaustion generated by the daily tasks that the caregiver has to perform. In addition, the caregiver will tend to neglect his or her own physical and psychological well-being, as well as his or her social life and leisure activities, in favor of what he or she has to do for the loved one ("I don't have time get that test done, I have to look after him!"). Stress, fatigue, sleep, appetite or libido issues, social isolation, etc., will feed the stress, fatigue, sleep disorders, isolation... in a dangerous spiral. Around 1 in 3 caregivers pass away before their sick loved one, that's a lot! 

There are also financial issues that can arise, for example if the caregiver has to reduce their working hours to stay with their loved one or when certain home help or equipment costs are added. 

And then there's all the energy it takes to maintain the relationship with the person, as I was saying: these efforts to understand, to adapt, to constantly make connections with the patient to "reach" them because they are no longer able to do so... it takes time and energy, both physical and mental.

Above all, what the caregivers we meet in our practice tell us is that they have to constantly make decisions for the sick person, on their behalf, and then shoulder the responsibility of the consequence of these decisions, of course. These decisions are not always easy ("Do I let her do it or do I intervene? Do I let him keep his autonomy or do I protect him?"), they contribute to what is sometimes called the caregiver burden.

You've written a book - "Bien vivre auprès d'un proche atteint de la maladie d'Alzheimer" ("Living well with a loved one with Alzheimer's disease") - can you tell us more? What motivated you to write for caregivers of Alzheimer's patients? 

A few years ago, I worked with Faustine Viailly and Corine Ammar - a gerontopsychologist and a gerontopsychiatrist respectively - in a day hospital for elderly people with mild to moderate cognitive disorders. With our patients, we often encountered situations where, to put it simply, we didn't know what to do! I am talking about those uncomfortable and doubtful situations where we are not sure what to decide because none of the options are totally satisfactory. We lacked the tools to resolve these doubts, which were neither medical, nor psychological, nor part of our codes of ethics.  

All three of us completed the "Ethics and Alzheimer's Disease" certificate at the Espace de Réflexion Éthique PACA-Corse. And there we discovered that ethics gives a name to the discomfort we feel in these situations and, above all, that it also provides the means to relieve this discomfort! 

As we continued our reflections after this training, we realized that the families we met at the day hospital were experiencing the same difficulties as we were, that they had the same feeling of discomfort when faced with certain decisions. 

Since ethics provided us professionals with tools to manage this discomfort, we thought: could it not be useful to family caregivers as well? This is the idea that motivated our writing project: the desire to share these ethical tools as well as others from psychology, centered on maintaining the connections I mentioned earlier (for example: How can we adapt our ways of speaking to the Alzheimer patient's particular way of understanding? Or how to understand the message the patient is trying to convey when it is "distorted" by their symptoms?). And of course, since this is a book that we wanted to be practical, we illustrated all our comments with concrete examples of these situations that we and our families encounter on a daily basis.

"Bien vivre auprès d’un proche atteint de la maladie d’Alzheimer", Benoît Michel, Corine Ammar, Faustine Viailly, De Boeck Supérieur 

How do ethics come into play in the care for people with Alzheimer's disease? 

We often have this vision of ethics as a complex or inaccessible thing, a matter for philosophers and that, in any case, it has nothing practical or concrete. However, ethics is present on a daily basis in the situations that caregivers, whether family or professional, encounter with sick people. 

I spoke earlier about the terrible weight of the decisions that a caregiver has to make all day long. The reason these decisions are so burdensome is that very often there are no clear answers: 

"My father wants to go out and buy his newspaper, should I let him?"  

– "Of course you should: he should remain free and independent! And it's also important to keep up his routine, not to mention that it obliges him to get up and dressed, to walk a bit, to meet people and talk... it'll do him good!"

– "Yes, but, at the same time, it's dangerous! He might get lost on the way, or fall down, or have an accident, or spend his money carelessly. It's all very well to want to let him be independent, but if he falls into a ditch on the side of the road, he will only be 'free' to freeze to death!"

Thoughts like this are common when helping a sick loved one. Should we prioritize their autonomy, their freedom or their safety? Should we respect their previous lifestyle and values, or their current desires? Should you force them? Should you let them do as they want? Can I impose care on him that he has refused to receive because he doesn't understand that it is for his own good? 

All these questions and situations are uncomfortable because there is no clear answer. But, as I said, this discomfort is precisely ethical! Without knowing it, caregivers are therefore confronted with ethical situations every day. 

The good news is that ethics is not only that unpleasant feeling of I-don't-know-what-to-decide: it also provides the means to solve these dilemmas! In particular, it teaches a principle that I find tremendously helpful and relieving: the value of our decisions does not depend on their consequences, but on the way we make them. A "good" choice is therefore a choice that we have made "well", and ethics provides the tools to do just that. 

This is why ethics and the tools it teaches are quite concrete on the one hand (as concrete as the everyday situations we have described) and very practical on the other, since they can be used in everyday life!

What can caregivers do to also take care of themselves? 

It's important to lean on your network of friends and family of course, but there are also a number of great organizations such as France Alzheimer in France (or Alzheimer's Association in the US) and many others that provide opportunities for self-care (discussion groups, etc.) and for care for both the caregiver and patient (activities adapted for the two to do together, etc.). Not to mention the typical sort of leisure activities and means of relaxation - cinema, sport, meditation, etc.  

But generally, it is not so much the means that caregivers lack to engage in self-care... it is rather the motivation. 

When you are a caregiver, you always find thoughts or ideas that prevent you from taking care of yourself: barriers linked to guilt, to the time you think you don't have, to the anxiety you may feel at the idea of not being understood, etc. You tell yourself that it's the other person who is ill, so you have to bear the burden on yourself, sacrifice your own care for theirs.

In reality, what I often say to the caregivers I meet is that the well-being of the sick relative cannot be achieved at the expense of their own, that's not a sustainable way of operating. Supporting a loved one who is living with Alzheimer's is much more often an endurance race than a sprint: you absolutely have to know how to take it easy to go the distance. 

What's more, the state of the patient is partly conditioned by the state of the caregiver: if the caregiver is unwell, the patient will be unwell too. And this is a vicious circle: when the patient is doing worse, his or her symptoms are more present, which means as the caregiver I am even more needed, which means I'm more tired, which means I'm going to be less patient, less able to deal with his or her behaviors or symptoms, which means he or she will be more agitated, which means I will be exhausted even more...

So, whether it's for yourself or because it will have positive consequences for your loved one living with Alzheimer's, taking care of yourself is never the wrong to do! 

Many thanks to Benoît Michel for sharing his expert perspective with us on Carenity!  

If you are interested in learning more about his book (in French), "Bien vivre auprès d'un proche atteint de la maladie d'Alzheimer" ("Living well with a loved One with Alzheimer's disease"), you can visit the publisher's website here. 

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Take care!