Pesach, the seder night, and the preparatory nights beforehand tend to bring with them many festivities involving a deviation from routine and large family gatherings. Events such as these can bring – even for a healthy individual – feelings of joy on one hand and stress and anxiety on the other hand. A person with dementia can experience the stress and anxiety in an exaggerated fashion that can impair them tremendously. Understanding the challenges in coping with this time period and preparing for them can be beneficial to the patient and his family as a whole.
We hope that the advice brought here can assist everyone celebrate Pesach with joy and tranquility.
Before the Holiday
1. Preparations for Pesach
a. Cleaning for the Holiday: a person with dementia is not always aware of time and space, and therefore changes to these factors can bring them to a state of anxiety and confusion. In order to reduce these sensations, it is best to begin the cleaning as close as possible to the holiday and only perform the required tasks, primarily getting rid of the chametz from one’s home. One should make sure to do this without stress and in a relaxed atmosphere.
b. Organization of Cupboards: cleaning the house is not connected to the halachot of Pesach and is not required. Generally, routine is good for people with dementia. Therefore, it is better not to juxtapose the holiday to tasks that are accompanied by changes in the physical space via cleaning and organization. If one decides to do this, it is advisable to organize the home and the cupboards when the dementia patient is not present. If they are present and the process is aggravating them, one may try to include them in the process. If this isn’t possible, one should stop and resume at a different time.
c. Stressful Atmosphere Before the Holiday: there are many preparations for Pesach and are stressful at times for the family. It is important to abstain from this when the person with dementia is at home. The pressure and stress can cause anxiety that a person suffering from dementia cannot cope with and it is best to act methodically and slowly when near them. This is true as well regarding conduct around those caring for dementia patients: one should make sure that the stress of Pesach cleaning does not bring them to collapse and inability to provide for the needs of the patient.
2. Biur Chametz
a. Even though the custom is to make sure and get rid of every crumb of chametz from the household, the halacha does not require this. According to halacha, one only needs to get rid of pieces of chametz the size of a matchbox (‘Kezayit’). In most homes, after a routine cleaning, crumbs of this size are eliminated (these type of crumbs are found generally in children’s backpacks, the car, and of course the kitchen). Since there is no obligation to remove crumbs of a smaller size, the protocol is to remove crumbs appropriate to one’s capabilities and the amount of distress potentially caused to the dementia patient.
b. If the person with dementia cannot check for chametz on their own, one of their family members should check for them, even if they do not live in his household.
c. One should nullify the chametz in one’s household after bedikat chametz the night before Pesach and once again after biur chametz in the morning before Pesach (The text appears in the beginning of the hagaddah).
3. Selling Chametz
Regarding a person with dementia who regularly sells the chametz, one may sell their chametz for them if it is impossible for them to actively consent. If one is not accustomed to selling the chametz, it is preferred that it is burned, but if this is too burdensome for them, one may sell.
4. The Fast of the Firstborn
A person with dementia who is unable to remember that the Fast of the Firstborn is exempt from fasting.
5. Engaging a Person with Dementia in the Holiday Meals
The fundamental principle regarding issues of dementia is that one should determine how to act based on the wellbeing of the person with dementia. Any change to the routine of the dementia patient can cause them confusion, unrest, wandering, and other forms of mental decline. Therefore, one should evaluate closely whether they are able to be out of the house, for how long, and most importantly – will they ‘gain’ anything from this or will the change just serve to aggravate them. On the other hand, taking part in the joy of the family, hearing familiar tunes and other aspects of the seder can benefit them and uplift their spirit. Therefore, one should consider their wellbeing cautiously.
6. Non-Jewish Caretakers
Involved in the preparations for Pesach and the seder night are many changes to the routine that non-Jewish caretakers may not be aware of. In order to assist them and the patient, it is imperative to inform them in advance about the general principles. It is advisable to prepare them for the complex reality in the kitchen during the cleaning and koshering, when part of the kitchen is chametz and part is kosher for pesach, changes in food products during the holiday, the prohibition of bringing chametz into the house, the seder night (where one is celebrating and who is coming), and one should instruct them not to pour wine.
The Seder Night
1. Recommendations
a. In order to assist the person with dementia, it is recommended to shorten the duration of time outside the house and their known environment as much as possible.
b. It is important to bring familiar objects to the seder night of significance to the dementia patient, such as the haggadah they generally use, a specific pillow, etc. One should pay attention to the seating arrangements as well, placing them in a comfortable seat at a quiet part of the table.
c. It is important that the person wears comfortable clothes that are easy to change if necessary. Therefore, it is preferrable not to dress them in new, less comfortable dress attire.
d. It is advisable to arrive at the seder night setting early when the atmosphere is calm, in order for the person with dementia to acclimate to the environment without noise.
e. It is important to seat the person with dementia next to a person who can ‘mediate’ between him and the seder and their needs throughout the evening.
f. It is recommended to prepare a printed version of the main portions of the Haggadah (the parts one is obligated to say; see later on) appearing in big letters and well-spaced for those with reading difficulty.
g. A person with dementia ‘experiences the present’ and therefore one should adjust the evening to their needs and abilities. It is advisable – as much as possible – to offer them to be a participant in the seder night and read what they can. When one can see that their patience is waning, one should expedite the seder, singing less songs and reaching the conclusion.
h. It is important to enable the person to retire to their room to rest if necessary. It is possible to organize a specific area in the living room that is farther from the noise of the seder table.
i. When appropriate, one should plan the seder in advance in two stages: organizing a short seder focusing on encouraging participation of the person with dementia, and afterwards focusing on the children and the other participants.
j. If the person with dementia is unable to participate at all in the seder night, it is recommended to perform a ‘mini-seder’ before the holiday starts. At this ‘seder night’, there should be a pleasant, communal atmosphere – preferably with close family members – and the integration of traditional foods such as matzah, karpas, charoset, etc., as well as holiday songs.
k. If a person with dementia wants to lead the seder in the same manner as past years and we know that they will not succeed at managing this – it is advisable to assist them and run the seder together using a modular format. It is possible for a different person to run the entire seder, giving the dementia patient the ability to lead whatever they can, so they will feel that they are leading the seder. Flexibility and compatibility with the dementia patient is necessary in cases like these.
l. Known songs and tunes can uplift the spirit of a person with dementia and bring up pleasant memories. It is recommended to sing with them and to them, everyday and especially on the seder night.
m. It is important to prepare the children and other participants of any unusual behaviors of the patient and offer ways to respond.
n. The seder night is a complex family gathering and therefore a dementia patient can at times express longing and ask about the whereabouts of a deceased relative. One should talk about positive aspects of the relative and abstain from correcting the ‘mistake’. It is possible to state that they are on their way, running late, or celebrating elsewhere and divert the conversation to another topic.
o. In summary, seder night with a dementia patient can be challenging and one should prepare for it so that it passes in a positive fashion. In advanced stages of dementia, participating in the seder night is not an obligation! Stress will not improve the atmosphere and a pleasant environment can cause the person with dementia and their family to have positive experiences. Granted that the gap between the functioning of the family member with dementia in the past and the current reality can be emotionally taxing, however it is important not to sink into depression but enjoy the ‘here and now’, even if this is not the ideal reality!
2. Halachot
a. Even though it is a mitzvah not to eat a large meal close to the start of the Pesach, for a person with dementia this is permitted. One may eat during the seder even if the time for this has not arrived yet.
b. A person with dementia is not obligated in the mitzvot of the seder night when they are unable to perform the seder independently. Therefore, one should adjust the seder night routine for them and reduce the burden. The seder night experience is very important and can be created in a calm, stress-free fashion.
c. Matzah, Maror, and the Four Cups
A person with dementia that has difficulty eating, swallowing, and has a complex, burdensome, daily routine surrounding food is exempt from the mitzvah of eating at the seder. If it is possible for them to eat without it being a burden, they should eat a kezayit of matzah at the very least – a third (17 grams) or even a quarter (11 grams) of a sheet of matzah – and a medium sized leaf of lettuce for the mitzvah of maror (if this isn’t possible – they should eat less than this and hear the bracha from someone else). For each cup of the four cups, one must drink the majority of a revi’it – 44 cm3. Drinking of wine should follow the seder of the Haggadah. Therefore, a person with dementia who is not able to stay for the recitation of Hallel should only drink 3 cups.
d. The Story of Yetziat Mitzrayim (the Exodus from Egypt)
From a halachic perspective, one can tell the story of the exodus from Egypt in a few minutes. Of course there is value to arranging a long seder night and “anyone who expands their discourse on the exodus from Egypt is praiseworthy”, yet it is imperative not to extend the seder beyond the capabilities of the dementia patient. The most important halachic parts should be recited slower, in order for the dementia patient to be able to follow along and take part in their recitation. In addition, the sections of song in the Haggadah, even if they are not important from a halachic perspective, can be a significant point of connection for a person with dementia to the seder and can bring up within them pleasant memories.
The minimum required recitation is: 1) kiddush; 2) Ma Nishtana (the four questions); 3) “We were slaves” until “it is praiseworthy” – or at least the first sentence; 4) “Initially our forefather’s were idol worshippers” until “and Jacob and his sons descended to Egypt” – or at least the first sentence; 5) “Rabban Gamliel used to say: anyone who does not recite” until “in every generation”; 6) the beginning of Hallel; 7) the bracha of redemption (“who redeemed us”) and the second cup. If they have enough patient, one can add: “go and learn” until “great and mighty” and some of the exegesis in that section.
e. Birkat HaMazon and Hallel
The last section of the Haggadah is Birkat HaMazon and Hallel, accompanied by the third and fourth cups. At this stage, it is possible that the person with dementia will be tired. If the family members wish to extend the meal and the sections after it, it is possible for one relative to say a shortened version with the dementia patient. The hallel that is after the seudah is comprised of two parts and two ending paragraphs; when there is a need to shorten – one can say only one section, which is the Hallel that one says on other days. The order is as follows: 1) Birkat HaMazon and the third cup; 2) Hallel – from “Not for us” to “You are my God and I will thank You.. for His kindness is everlasting” (if necessary one may shorten this); 3) the blessing of Hallel – “they shall praise you God” until “King exalted in praises” without the Nishmat prayer; 4) the fourth cup and the afterbracha on wine.
f. The Songs at the End of the Haggadah and Those During the Maggid
The songs after Hallel have no halachic status. Even familiar tunes such as “Vehi She’amda” or “Dayenu” are sections of secondary halachic value. However, songs uplift the soul and the routine tunes of the seder night can bring joy to a person with dementia. One may deviate from the established order of the Haggadah in order to sing these songs even if the time has not come to sing them.
During Pesach
1. Chametz
a. Eating Chametz: one should not feed a dementia patient chametz, even if they are unaware of this. If there is a fundamental need – this is permitted, as explained further on.
b. Kashrut: regarding a person with dementia who is fed using designated medical nutrition (such as Ensure) and this represents their primary food source – one should view this food as required for pikuach nefesh and it is permitted to provide it even if it is not kosher for pesach. Understandably, if there is a kosher for pesach substitute, one should use it.
c. Nutrition Via Nasogastric Tube or PEG: one may administer nutrition even if it is not kosher for pesach, as this is not truly considered eating.
d. Medications are not considered fit for eating and therefore one should not withhold medication from a person with dementia.
2. Chol Hamoed
a. Regarding a person with dementia who does not like the food unique to Pesach (such as matzot) – one should try to cook a broader spectrum of dishes and provide him with other foods (increasing the amount of fruits, feeding them flavorful kosher for pesach crackers). If the person with dementia requests to eat food that is not kosher for pesach, we can try to offer him a compatible substitute. There is no reason to engage in a debate around the request to eat chametz on Pesach, one should instead offer a substitute.
b. Putting on Tefillin and Shaving: a person with dementia may request to put on tefillin or shave on chol hamoed – similar to his conduct during the rest of the year. In both cases, there is no obligation to withhold this from him and one may let him conduct himself as he normally does.
c. Chol hamoed is a challenging and confusing time involving a deviation from routine. On the one hand, this time brings with it an opportunity – the family is more available and there is free time to spend with the dementia patient and connect with them. It is advisable to try and enjoy the shared experience and turn it into quality time. Oftentimes, bringing up memories of childhood is a positive activity for people with dementia. It is possible to initiate a conversation with family members where the person shares memories of Pesach from their childhood: what they wore, what special customs they had, how the seder night looked, etc.
d. A person with dementia can be a challenge for young children (of course dependent on the stage of dementia). The setting of chol hamoed allows for a more interactive meeting between children and their grandparent with dementia – and this can be an opportunity for a more positive encounter with their grandparent. If the children ask about their grandparent’s behavior, one can tell them that they are sick and sometimes the disease causes them to act in a manner that we wouldn’t expect, but we love our grandparent just the way they are.
You are not alone!
Questions? Send us a message and we will be happy to help.
May we have the zechut to celebrate the chagim with joy!
Chag Kasher Ve’Sameach!
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