Progressive Dementia – How Do We Discuss It?

Rabbi Yuval Cherlow

When the initial symptoms of dementia begin to develop in one’s parents, the proper thing to do is to face the issues and discuss them. Shying away from open conversation only worsens the situation.

The initial symptoms of dementia rock a family. Experts in the field have identified the first signs and symptoms: a worsening memory deficit, difficulties with speech, failure to accomplish familiar tasks, loss of orientation in time and space, frequent mood swings or behavioral changes, and many more. All of these necessitate approaching the new reality, consulting with professionals, etc., yet at the same time they present the family with the challenge of discussing with the parents or the one developing the symptoms about the future.

Why is the conversation about the situation so essential? First and foremost, it is the right, and perhaps even the responsibility, of the person to be aware of their situation and what is going on with them. However, this also has practical implications beyond its ideals, such as: allowing the person with progressive dementia to determine in advance how they would like to be treated; At times the person exhibiting the symptoms may harm themselves or others, such as if they continue driving, etc.; as long as a person is still in the initial stages – there are many aspirations that they wish to fulfill, and it is a shame to waste time, etc. On the other hand, it is very difficult for the family to approach this discussion, whether because of the uncomfortable nature of the conversation or the hesitance to accept it, mainly due to the deep sensation that this is a sort of declaration of the beginning of the end, and due to the fact that oftentimes the parents will unilaterally refuse to recognize the new situation and the conversation will turn into a big argument.

What, then, is the proper thing to do? First and foremost, before having the conversation, one should understand the facts of the situation. We are dealing with a chronic condition; thus, it will accompany the family for many years. Throughout this time there will definitely be a host of challenges, but there will also be sparks of light, compassion and kindness, and a special connection that could very well not have existed beforehand. The more one prepares for this in a more organized fashion – the more the coming years will be blessed. And most importantly – having a conversation as open as possible is not a violation of honoring one’s parents. Quite the opposite, this is the proper thing to do, and in light of the Sages’ adage that there are those who work their father in the flour mill and are regarded as worthy of eternal life, we see that at times specifically the interaction with a tough reality honors one’s parents more than concealing and shying away from it. 

Already from the way that God talks to Adam HaRishon – as Rashi explains “Where are you? – he already knew where he was, but [he wished] for him to engage in conversation so that he would not feel frightened to respond” – we learn that one must enter these conversations slowly. Listen to the difficulties they describe, do not give advice, but ask questions, provide space between topics (we also learn this from the ways of God), provide options: maybe it is this? Perhaps it is best to get checked out or assessed? Etc. The goal is a conversation which is not accusatory but encourages discussion, not informative but a consultation with the person.

The starting point is that as long as the parents are able to make decisions for themselves and this does not cause harm to themselves or others, even if the matters are complex and difficult – this is the utmost respect, and one must follow them as much as possible. If possible – the best option is to decide in advance on a path, when it is clear that all parties have decided how best to proceed if additional symptoms require a shift in the reality. This is a considerably better method than waiting until one is forced to make a decision with no ability to continue as previously normal. 

The most fundamental principle is to ensure that they are happy with the decision. We do not educate our parents. At this stage we also do not engage in dramatic attempts to cure disorders. Of course, there should be no intention to control their lives. The honest and true goal is to do as much as possible to ensure that their life is pleasant, and to use this rationale to navigate this open discussion.

For Additional Reading:

  • When is it Proper to View a Dementia Patient as Someone Who Needs Decisions Made for Them – Without Their Consent?
  • Should one force dental care on a parent with dementia?
  • Dementia and Jewish Values – Conference of the NGO Emda and Tzohar Rabbinical Organization

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