The daily care¹ of a person suffering from dementia² is a grueling challenge for family members. At some stage, the patient will require nursing care; communication with him becomes difficult and sometimes impossible; his behavior can be abnormal and even undignified, and, unfortunately the disease can persist for many years. The treatment extracts considerable costs from family members and raises many ethical questions, such as: To what extent can the patient express his wishes? Is it possible to prevent the patient from acting in an undignified manner? If so, how can this be accomplished?³

Other questions revolve around the responsibility to remain completely truthful in how we relate to the patient and his condition : Is it appropriate and necessary to provide the patient with all the information about his illness and thus help him prepare for the future? Or is it better to withhold this information in order to protect him? Should we involve him in making decisions or is it better to decide on his behalf? How should we proceed if we have already shared information with him and he has chosen to ignore it? Of course, these dilemmas very much depend on the patient’s state of mind, and if telling the truth will increase resentment, conflict, tension, etc.

For these reasons, it is almost impossible to establish clear-cut universal rules, as each decision must be adapted to the patient’s specific situation.

Making decisions involving the medical treatment of a dementia patient, which like any other medical treatment requires informed consent, is complicated, because it is not clear to us what he is thinking at different stages of his disease, and it is not at all evident that he is exercising sound judgment.

Administering medical care for dementia patients also is complex, and leads to many questions, such as: When a patient has advanced dementia, may we refrain from providing medical treatment that will merely prolong his life? Is the patient suffering as a result of his compromised mental state? If so, perhaps it is preferable not to give him medical treatment that will prolong his life, even if he will not suffer from the treatment. What is the point of living such a life, and is there an obligation to prolong it?

Coping with dementia requires a far more detailed discussion that exceeds the scope of this pamphlet. We hope to address these issues at length in our forthcoming book.

Stating the Truth and Respecting the Patient

1. The basic assumption is that every patient is entitled to full disclosure about his condition, and doctors are obligated to provide this information. However, in the case of a dementia patient this obligation is complicated and one must exercise great caution. In the early stages of the disease, the patient should be apprised of his medical condition. In advanced stages, this becomes largely irrelevant⁴.

2. In general, when it can be assumed that it is in the patient’s best interests, it is permitted to provide only partial answers to his questions. In extreme cases, when it is necessary to help the patient feel more at ease and no harm will result, we may even lie to him. At the same time, one should not become accustomed to lying, and lying should be a last resort⁵.

3. Even when the patient’s cognitive functioning is impaired, he should be treated respectfully⁶. Apart from the respect due to every human being, when one cares for a parent, the child is bound by the obligation to fear his mother and father⁷. At some point during the deterioration caused by the disease, maintaining the patient’s dignity makes it necessary to inform people who interact with him of his prognosis, so that he will not be disrespected or denigrated on account of his behavior.

Life-Prolonging Medical Treatments⁸

1. It is appropriate to suggest to a dementia patient in the early stages of the disease that he should consider giving advanced directives and appoint someone with a continuing power of attorney, under the Legal Capacity and Guardianship Law, and also update his instructions over the course of time, for as long as this is possible⁹. If it is not possible to obtain clear instructions from the patient, it is appropriate to conduct a discussion with him, together with his family, and medical professionals, in order to determine his general wishes and feelings.

2. In the case of a dementia patient in the later stage of the disease, who can no longer express his opinion, if he stated in advance that he is not interested in life-saving treatments, it is permitted to withhold life-prolonging treatments¹⁰. However, it is important to take into account that when he previously expressed his opinion, he was unaware of the suffering that would be experienced by withholding treatment.

3. With regard to a dementia patient who had not given prior medical instructions, aside from the legal requirement to appoint a guardian or grant continuing power of attorney¹¹, we must proceed in accordance with what we assess his wishes to be, with deference to the positions he expressed in the past and in light of his current medical condition¹².

4. The question of feeding a person suffering from dementia is one of the most complex and challenging difficulties. His reluctance to eat may be caused by unresolved physical issues (such as constipation or fungus) or emotional issues (e.g., a loss of appetite or feelings of despair and rejection of life). Moreover, at times we do not know how much food the patient requires or whether he actually feels hungry, and we are not always well-acquainted with forced-feeding options and the toll they take, given that these interventions may cause more harm than good.

5. As long as the patient who refuses to eat is capable of communicating, we should talk to him calmly and, if he will listen, explain to him the importance of eating. We should help him eat and feed him with a spoon and the like, in a manner that preserves his dignity, without coercing him, to the extent that this is possible. Furthermore, it is proper to consider the use of “mercy feeding,” i.e., nutrition that focuses on the patient’s quality of life and his feelings while also fulfilling other needs, such as the comforting touch of a feeding therapist and the like.

6. In the case of a dementia patient who cannot be fed in the normal way, there are different artificial nutrition options. Choosing the best option is medically and halakhically complex, and the decision will depend on the details of the case in question. Both the medical team that cares for the patient and the patient’s family should be involved in making this decision. From a halakhic and ethical perspective, when the medical team feels that feeding will not benefit the patient and he is suffering – and certainly when it seems to harm the patient –artificial feeding should not be used¹³.

7. We are obligated to continue administering medication that is given to the patient as part of his routine treatment, but we may refrain from providing medications that will likely only prolong the patient’s life of suffering without providing a cure¹⁴.

The Obligation of the Family to Care for the Patient

1. The obligation to care for one’s parents is part of the basic responsibility to honor one’s father and mother. Providing nursing and medical care for one’s parents raises complex questions, some of which are analyzed here and others that are discussed in detail elsewhere¹⁵.

2. If a parent behaves in a way that embarrasses himself, the son or daughter may correct him in a respectful manner. If, as a last resort, it becomes necessary to use force, it is preferable for a therapist to do so¹⁶.

3. Washing and caring for a parent’s private parts or attending to wounds in these parts of his body should be done by another person. If no one else is available, a son may bathe his father and a daughter may bathe her mother. If it has been determined that it is important to the parent for his child to bathe him, it is permitted even if another person is on hand. If there is no other available option, a son may bathe his mother and a daughter may bathe her father¹⁷.

4. If it becomes necessary for one’s father or mother to live with their child and the child has the ability to accommodate that need, this constitutes a beautiful level of fulfillment of the mitzva to honor one’s parents. However, this is not an absolute obligation, and other considerations must be taken into account as well, such as the anguish this might cause to the son or daughter¹⁸, the harm to other family members, as well as financial considerations¹⁹.

5. A patient’s spouse must take care of their husband or wife. This obligation derives from the bond that the couple established at the time of their marriage²⁰.

6. Beyond their responsibility toward the patient, family members must also take care of themselves, their wellbeing and health²¹. This is especially true when it comes to an elderly spouse who lives with a dementia patient and may find himself caring for the latter around the clock. Caring for a patient with dementia is physically and emotionally grueling. For this reason, the obligation of family members toward the patient has limits, that depend on the situation. For example, the caregiver does not need to postpone his own medical treatment in order to care for the patient²².

1. Some of the issues discussed here relate to other chapters in this pamphlet. Here we deal with the unique aspects of dementia, while the relevant sources are presented in detail in the chapters that we reference. Other aspects are discussed in additional position papers on the Tzohar Ad 120 website; here we focus on the central themes.
2. Dementia is a degenerative disease of the brain. It is a chronic progressive disease characterized by a significant decrease in a person’s cognitive functioning. It gradually impairs learning and memory abilities, linguistic functioning, attention span, time and space orientation, decision-making and social functioning. Alzheimer’s disease is a common cause of dementia, but there are other diseases that lead to dementia. Alzheimer’s, like most diseases or conditions that cause dementia, is irreversible, and accordingly, medical treatment focuses on slowing its progression and relieving its symptoms. Dementia leads to changes in one’s bodily functioning and behavior. Some of these changes are reflected in recurring questions, anxieties, confusion, and difficulty in decision-making, among other things. The symptoms of dementia change and worsen over time. The nature of the symptoms and their progression vary from person to person, but as the disease worsens the patient will have more and more difficulty performing daily living tasks and communicating with his environment. Over time he will become completely dependent on others. For more information see the website of EMDA – the Alzheimer’s Association of Israel (https://bit.ly/3tbIVIx).
3. We field many similar questions. The following is an example: When is it right to deny a person with dementia access to means of payment, such as credit cards or bank accounts? Should we report his inability to drive a vehicle to the authorities? If so, at what stage? Should we force him to have a caregiver at home? Should we insist that he eats a hot meal every day? Should we move our parents closer to family members without considering their wishes? May we administer sedatives to a patient that do not help him directly, but rather in order to provide some peace to the partner or caregiver (who will otherwise leave)? Is it better to have a male caregiver take care of a man, since he will feel more comfortable with him, or should we take into account the feelings of his wife, who will be more comfortable with a female caregiver in the home? These issues are highly complex because they have the potential to cause harm (at times severe) to the way the patient’s self-perception. A wealth of material on these issues can be found on the Tzohar Ad 120 website.
4. For further discussion of the obligation to tell the patient the truth, see chapter XVII, specifically footnotes 134–35.
5. For example, if a patient is unaware that he is hospitalized in a medical institution, and he asks when the shuttle home will arrive, it is advisable to answer in a manner that is not an outright lie, such as “The shuttle will arrive soon.” However, if this does not reassure him, one may also say “The shuttle will arrive in an hour,” under the assumption that this answer will calm the patient. For further discussion of this issue, see chapter XVII, footnotes 139–40.
6. In this context, Rabbanit Michal Tikochinsky (“Ageing and the Treatment of Ageing in Halakha,” Teḥumin, 41 (2021), p. 278) differentiates between two types of dignity. One type is dignity in the sense of “shame,” which is a concept that first appears in tort law and relates to a person’s awareness. Consequently, it is important to assess if the individual’s dignity has indeed been compromised. The second type is the dignity associated with the image of God in man, which does not depend on man’s subjective awareness and even applies to deceased individuals. Every halakhic question must necessarily discern which type of dignity is at stake.
7. Shulḥan Arukh, Yoreh De’a 340:1–; see Rabbi Y. Zilberstein, “Respecting a Father Suffering from Dementia,” Rabbi Yehuda Shaviv (ed.), Devarim She’ein Lahem Shi’ur, Alon Shevut 2015, pp. 146–54.
8. Earlier we addressed both the question of life-prolonging medical treatment for a patient in pain (chapter VI) as well as the issue of treating a patient whose medical condition is terminal (chapter VIII). Though a dementia patient will not recover, the period of illness is long and does not necessarily involve physical suffering. It seems straightforward and universally accepted that at the initial stage of the disease, when the patient is functioning reasonably well and his mind is clear to some degree, we should not withhold medical treatment from him even though he has already begun the process of sinking into a state where life appears meaningless to him. However, as the disease progresses and the patient’s level of functioning and clarity decrease, the question arises as to whether we are obligated to extend his life. The dilemma exists because it is impossible to ask a patient in this state if he has “reached the end of life” (see Sota 46b; footnote 56, above), although even in the absence of a living will, it can be assumed that at some point we ourselves can attest that he has had enough of life. It must be emphasized, of course, that no active step may be taken to shorten the patient’s life, and it is absolutely necessary to provide him with routine medical treatment. The question is simply whether drastic measures should also be undertaken in order to prolong his life.The decision as to how the patient should be treated must also take into account his subjective degree of suffering from his disease. The extent of the suffering of a dementia patient has not been well established on a clinical level. Some experts believe that the patient has no awareness of suffering, while others maintain that he suffers, and is unable to express it. (We have consulted with many experts in the field, and there is no consensus on this issue). Practically speaking, the medical staff usually knows how to identify even the slightest signs of suffering in the patient, to the extent that he is suffering, and it seems correct to follow a stringent approach in situations of uncertainty and assume that he is suffering but cannot express himself. Therefore, without denying the need to carefully examine each case in detail, it seems that a patient in a state of advanced dementia should not be treated using drastic measures such as artificial respiration, or artificial feeding (which typically is not advantageous from a medical perspective in this case). However, he must be given treatment to relieve pain.
9. For more, see chapter XIX-XX.
10. See footnote 52.
11. For further discussion about appointing a guardian, see footnote 51.
12. See footnote 52, above.
13. For more, see chapter X.
14. For more, see chapter XI.
15. See the position paper, “Medical and Nursing Care of Parents by a Son and Daughter” (https://bit.ly/3FmjCXw). For further discussion of the two aspects of the mitzva to honor one’s parents, as well as the moral and halakhic aspects of gratitude, seeYechiel Michael Barilan and Rabbi Yehoshua Weisinger, “Surrogacy, Donating Gametes, and Gratitude,” Assia 121–22 (2022), pp. 76–8.
16. Rabbi Y. Zilberstein (“Respecting a Father Suffering from Dementia,” [footnote 94, above, pp. 148, 154]) writes that a child is not permitted to use force. Treating a person suffering from dementia generates additional questions concerning the patient’s dignity, such as whether the patient can be forced to bathe. On the one hand, forcing him to bathe can preserve his dignity, so that he will not be dirty in the presence of others, in addition to the fact that bathing is necessary for his health. On the other hand, forced bathing in and of itself may compromise his dignity. Similarly, is it permitted to tie down a dementia patient for his own good? If so, under what circumstances,? See Tzitz Eliezer, XII:59; Nishmat Avraham, Yoreh De’a 240:5; Encyclopedia of Medicine and Halakha, vol. 2, “Parents,” p. 543; vol. 3, “The Elderly,” pp. 347–48. See also the position paper, ibid.
17. The Gemara in Pesaḥim (51a) states that it is prohibited for a son to bathe together with his father. The Rama (Even HaEzer 23:6; Yoreh De’a 242:16) writes that the custom is to allow this practice, but he refers to a cultural reality in which people bathed wearing pants. Pitḥei Teshuva writes in this context (Even HaEzer 23:5): “According to this, nowadays, when we do not cover up, the practice is not permitted, and I do not know what everyone relies on to be lenient in this regard.” The author of the work Shema Avraham (section 70) permits a son to take care of his father and remove leeches from him since the son is dressed and the father is not completely exposed, and the son is preoccupied with his work. In contrast, the comments of the Arukh HaShulḥan (Even HaEzer 23:8) and Rabbi Tzadok HaKohen of Lublin (Sefer HaZikhronot, Positive Mitzva 1) imply that bathing should be prohibited even when it is necessary for the father. Based on the statement of the Shema Avraham, poskim permit a child to wash and dress his parent when nobody else is available. It stands to reason that this will also depend on the nature of the relationship between the parent and child: In some cases, this might be perceived as an invasion of privacy, whereas in other cases it would actually be an expression of the intimate relationship between them. For further discussion, see the position paper, ibid.
18. The question of whether a son or daughter should have a parent live in their home, whether on account of a medical need, or the parent’s inability to function independently, or an emotional need (such as loneliness) should be divided into two sub-questions: (a) Is the son or daughter obligated to have their parent live in their home? (we will deal with this question here); (b) What should be done when one’s spouse opposes this move, or when it is assumed that bringing a parent into the home will harm the relationship between the couple? (On this issue see the next footnote.) In principle, if a father or mother needs to live together with their son or daughter, and it will not entail financial loss, it is a great mitzva for the son or daughter to welcome them into their home, and this is part of their basic duty toward their parents: “He gives him food and drink, dresses and covers him, and brings him in and takes him out” (Shulḥan Arukh, Yoreh De’a 240:4). However, a son and daughter are not obligated to spend their own money to honor their parents; the honor should be covered by the father’s estate (ibid., 5). Accordingly, Rabbi Eliyahu ben Ḥayyim (Mayim Amukim, II:101) writes that a son is not obligated to let his father live in his home. Rabbi Menaḥem Slae (“Housing and Living Conditions of the Elderly,” Teḥumin, 7 (1986), pp. 260–61) inferred from his comments that one is not at all obligated to bring an elderly parent to live in his home. In contrast, Rabbi Y. Zilberstein, (“Elderly Parents and Their Honor,” Kol HaTorah 43 (2007) pp. 228–29) inferred from Rabbi Eliyahu ben Ḥayyim’s statement that this obligation is suspended only when one will suffer direct financial loss. For example, if the son is looking to sell his house, he is not obligated to have his parents live with him there. However, if it will merely entail a failure to turn a profit, such as in a case in which the son would like to rent his apartment to someone else, he is obligated to fulfill his father’s wishes and allow him to live in his house. In practice, the son is not obligated to have his parents live in a house that belongs to him, but one who is able to and actually does so, is most certainly acting correctly. For more background about this important issue, see the position paper, “To What Extent Must One Honor His Father and Mother: The Mitzva of Honoring Parents Versus One’s Obligations Toward Himself” (https://bit.ly/3C4hwtI).
19. With regard to a case in which a spouse opposes having a parent move into their home, the Rambam rules that the son or daughter is not allowed to have the parent move in (Mishne Torah, Hilkhot Ishut 13:14), and the Shulḥan Arukh rules likewise (Even HaEzer 60:9–10; see also Rabbinic Court Decisions of the State of Israel, I, p. 201; II, p. 353). Even when there is no explicit objection on the part of the spouse, if there is a concern that having the parent live with them might have a negative effect on their marital harmony, it should be avoided. If there is an option of living in a separate unit with its own entrance, the Rashba rules that one is obligated to have the parent live there (Responsa of the Rashba, IV, 168). However, friction can result even in such an arrangement, and the Rashba himself discusses this in his responsa and offers technical solutions. Accordingly, each case must be judged in light of the specific circumstances. Rabbi Y. Zilberstein, (“Elderly Parents and Their Honor,” (previous footnote) p. 230) contends that the spouse’s discomfort is taken into account due to the misery this will cause, which is considered a “loss” to the child, and because a husband has a duty to love his wife. In our opinion, the basis for this is the verse that appears in the account of creation: “Therefore, a man shall leave his father and his mother and cleave unto his wife, and they shall be one flesh” (Genesis 2:24). This verse determines that it is natural that the deepest connection that a man develops will be with his wife (see the Ramban’s commentary to this verse), and this bond necessitates a certain detachment on the part of a married man from his relationship with his parents. The preference for the relationship between a man and his wife does not negate the mitzva to honor one’s father and mother, nor does it render it a negligible duty; rather, it establishes the proper hierarchy between two important obligations. For further discussion, see the position paper, “Honoring One’s Father and Mother in Opposition to One’s Obligations Toward his Wife” (https://bit.ly/3edltSP); Rabbi Y. Cherlow, In His Image: The Image of God in Man, Jerusalem, 2009, p. 160, 171–73. (An English translation was published in 2016).
20. A husband is obligated to provide medical treatment for his wife as part of his responsibilities toward her listed in the ketuba (marriage contract), even if it is not written explicitly. See Mishne Torah, Hilkhot Ishut 12:1–2; Shulḥan Arukh, Even HaEzer 79. For further discussion of the status of the ketuba obligations nowadays, see Rabbi Yaakov Ariel, “The Structure of the Modern Family: Halakhic Ramifications,” Teḥumin, 22 (2002), pp. 129–47. According to Rabbi Ariel, marriage today is predicated less on dependence and more on reciprocity. Each couple enters marriage with the intention that they will act in accordance with the prevalent custom, and they are halakhically bound by it. It seems that we can say that the responsibility to take care of one’s spouse as best as one can is the current prevalent custom.
21. Elsewhere we elaborated on the principle that a person’s obligations toward himself take precedence over his obligations toward others (see the position papers mentioned in footnotes 105–06). The Gemara in Bava Metzia (33a) states that the Mishna’s determination that there is an order of preference for restoring lost property – which delineates that handling one’s own lost property takes precedence over a lost item that belongs to his father or rabbi (Mishna, Bava Metzia 2:11) – is derived from the verse: “Only so that there shall be no needy among you” (Deuteronomy 15:4), which implies that one’s property takes precedence over that of any other person. In other words, the initial duty imposed on a person, in the context of the mitzva of charity, is his duty to avoid becoming poor himself. The baraita formulates its directive as a general principle, and the Rambam concurs: “A person himself takes precedence over others, whomever they are.” We should add, by way of qualification, that the rule of “Yours takes precedence” is not unlimited in scope, as otherwise we would rationalize and justify all types of offenses. Indeed, the very same passage qualifies: “Anyone who fulfills this principle with regard to his own [at the expense of others] will ultimately come to experience that fate.” One may not hide behind the principle that “yours takes precedence.” Rather, he is obligated to find a way to help others, as Rashi explains in his commentary: “Even though Scripture did not demand it of him, one must find a way to go beyond the letter of the law, instead of scrupulously saying ‘mine comes first,’ unless he will suffer an evident loss […].”
22. Based on the principle of “Yours takes precedence,” as explained in the previous footnote, there are limits to the obligation to honor one’s father and mother and the duty to care for a spouse, despite the importance and broad scope of these mitzvot. Caring for a patient can sometimes place a heavy emotional strain on a son or daughter. The Talmud relates that Rabbi Assi was unable to cope with his mother’s demands and chose to move to the Land of Israel instead (Kiddushin 31b). In line with this story, the Rambam (Mishne Torah, Hilkhot Mamrim 6:10; see also Shulḥan Arukh, Yoreh De’a 240:10) rules that “If one’s father or mother has become mentally unstable, he should try to behave toward them as befitting their state of mind until they receive [Divine] mercy. If he is unable to endure the strain any longer, because they have become completely insane, he may leave them and go elsewhere, and instruct others to take proper care of them.” The Ra’avad (ibid.) is puzzled: If a son cannot take care of his parent, of what use is someone else? The Radbaz (ibid.) resolves the difficulty by explaining that there are things a son cannot do that a stranger can. Poskim learn from here that there are situations in which it is preferable to hand over a parent’s care to a responsible third party. For more information, see the position paper, “Medical and Nursing Care of Parents by Their Son and Daughter”, footnote 102.