How Judaism Views Patients with Dementia
What is Dementia?
Dementia describes a group of symptoms associated with a decline in memory, reasoning or other thinking skills. It is caused by damage to brain cells that impacts their ability to communicate, which can affect thinking, behavior and feelings. Many different types of dementia exist, and many conditions cause it. It’s critical to identify the type of dementia as this will impact possible treatment plans (in cases with potential therapies) as well as how a person and their loved ones may respond to new challenges.
What is Alzheimer’s?
Most types of dementia are progressive diseases, including Alzheimer’s disease, which accounts for 60-80% of dementia cases. One of the early symptoms of Alzheimer’s is trouble remembering new information. As Alzheimer’s advances, symptoms get more severe and include disorientation, confusion and behavior changes. Eventually, speaking, swallowing, and walking become difficult.
Dementia poses a number of challenges, both in terms of providing appropriate care and adjusting to new realities that impact relationships between the sick person and their caregivers.
The most important religious consideration regarding people with dementia: treat them with dignity and respect, just like you always did. When dealing with a parent, the mitzvot of honoring and revering one’s parents continue to apply, even under difficult circumstances. Fulfilling these mitzvot under these conditions is a challenge but also an important religious opportunity.
Here are some key factors to consider when thinking about dementia care:
1. Advanced Planning: Progressive diseases lead to evolving caregiving needs, sometimes more quickly than anticipated. For this reason, it is critical to plan in advance, as much as possible, for different contingencies. These conversations may be difficult at times but are essential. Some important questions include:
- Financial and Legal: What resources are available to pay for different types of care and living options? Has the person designated financial and healthcare proxies and completed an advanced healthcare directive? Have financial and legal affairs been put in order? This will be critical as the patient loses capacity to make decisions for themselves.
- Living Conditions: Where does the patient want to live? Is it possible to continue to remain in their home, and for how long? If not, what are the alternatives? In either circumstance, what types of assistance are required?
- Division of Responsibilities: Various family members or friends might play different roles in helping care for a patient with dementia. This can include keeping company, trips to the doctor, paying for bills, etc… Who is in a position to take on different responsibilities? Can they balance those responsibilities with work and other obligations that they have, including to their other family members (like spouses and children)? These responsibilities might change over time as people change jobs, move into different homes, children age, and other variables. It’s also critical to think about who can provide respite or help when caretakers need to take a break or vacation.
- Goal-Setting: Given the patient’s current condition, what are realistic goals to set that provide hope, happiness, and meaning? What are the pathways toward achieving those goals?
The answers to these questions may shift over time and therefore should be revisited on a regular basis. Ematai’s advanced healthcare directive and conversation guide can help facilitate these discussions and record different preferences.
2. Truth-Telling In general, Ematai supports the position that healthcare providers and family members should not withhold information from patients. (See here). This includes sensitively revealing an initial diagnosis and prognosis regarding dementia.
In cases of patients with middle or late-stage dementia, sometimes disclosing bad news, illnesses, or other health problems might lead to confusion and harm a person’s emotional well-being, especially if they will have to be told the same distressing news repeatedly. Discretion may be taken in these cases to withhold certain information and, when absolutely necessary, even to lie to the patient. Caregivers should deliberate carefully before taking such steps.
3. Withholding Nutrition and Medical Treatment: Early-stage dementia patients must continue to receive all healthcare treatments and nutrition to keep them alive and maintain their health. A nutritionist can sometimes provide helpful, individualized strategies for successful diets and feeding techniques. As dementia advances, many people lose the desire to eat; for some, it can also become a choking hazard. This will impact the choices that caregivers need to make.
Regarding people with advanced dementia, there are different views among Jewish ethicists:
- Regular medical treatments, including antibiotics, should be administered as needed while nutrition and hydration must be provided. If the patient is resistant to receiving food or nutrition, caretakers should try to convince them to accept it. Some people with dementia may be willing to accept food if provided through slow and careful hand feeding. Otherwise, artificial nutrition and hydration techniques might become necessary. However, the patient should not be force fed, as discussed here.
- All new therapeutic treatments, including oxygen or artificial hydration and nutrition, may be withheld from people with advanced dementia, particularly if that was the previously expressed wish of the patient. The primary goal of care should be maintaining the comfort of the patient.
While a proxy may also make this decision, it is preferable for the patient themselves to have indicated their preference in advance. The Ematai conversation guide allows people to express their values and preferences regarding this choice.
4. Living Arrangements: Many patients with dementia will want to live in their home while getting regular support from family members. When that’s not possible, some will prefer living in the home of a family member. They may feel a greater sense of routine and comfort in a familiar, loving environment. When possible, this is a great mitzvah and beautifully exemplifies intergenerational loving kindness (chesed).
That said, for many families, such an arrangement will greatly disturb the home’s family life, disturb work routines, and/or impact their emotional health. At other times, the condition of the person with dementia mandates that they live in a facility with more specialized care. This dilemma was already confronted by Talmudic sages and continued to be discussed over many centuries. There is no one answer to this question, and each situation must be evaluated on its own. (Ematai’s conversation guide can help families have these sensitive discussions during the earliest stages of prognosis.)
Whatever solution is found, maintaining a sense of respect and care for the loved one is of paramount importance.
5. Mitzvah Observance: Familiarity and routine are very important for people with dementia. Beyond the intrinsic worth of rituals and mitzvot, maintaining a person’s religious practices can be critical toward preserving their emotional well-being and personal sense of meaning. Yet it can also become a difficult burden, if not impossible, when their physical or emotional state does not allow them to easily fulfill these obligations.
While each case must be handled individually, here are some general principles:
- Positive Commandments: Obligated or Exempt? People with early-stage dementia, like other sick patients, are generally obligated to fulfill positive commandments, when feasible. People with advanced dementia are exempt from these requirements.
This classification, however, is not always binary. People with different cognitive and emotional abilities may be obligated in some types of mitzvot but exempt from others. A person, for example, might be able to eat matzah or perform other mechanical actions but not serve as a witness at a wedding or help make a prayer quorum (minyan). Some people’s faculties might regularly shift, making it possible for them to sometimes perform mitzvot but not on other occasions. A judgment call will need to be made based on the assessment of their rational faculties as well their emotional needs. As always, we recommend consulting with your healthcare providers and rabbi for further guidance.
- Prohibitions: Our priority remains protecting the safety and welfare of a person with dementia. That said, when possible, we should remind them of certain prohibitions, such as observing the Sabbath. Sometimes a simple reminder will help them be cognizant of the day and help preserve a sense of sanctity of time.
In other circumstances, cognizance of time can be meaningless to people with dementia, and there is no need to stop them from doing certain actions on Shabbat. When necessary for their welfare, some Shabbat prohibitions may be done on their behalf, preferably by a non-Jewish caregiver. If this includes prohibitions that disrupt the general Shabbat atmosphere in a home (such as watching television), one should try to arrange a designated spot for such activities. A rabbi may be consulted for further guidance.
- Yom Kippur: Yom Kippur represents a special day on the Jewish calendar. For patients with early-stage dementia, it may be particularly important to continue fasting and preserving this annual moment of sanctity. That said, if their daily dietary consumption is already compromised and poses health risks, they may need to consume liquids or even food, preferably in small amounts (shiurim), as directed by their healthcare provider and rabbi.
As dementia advances, people frequently become less aware of holidays; moreover, adding dietary constrictions may only confuse them and/or disrupt their regular nutritional intake. Their physical health may also be vulnerable to dietary restrictions. It may be necessary for them to eat or to be fed, especially when they request food.
Once a person has late-stage dementia, they may become exempt from fasting and should eat or be fed as they normally would to protect their sensitive health condition.
Please consult with your healthcare provider and rabbi for further instructions.
- Kosher Dietary Laws
Meat & Milk: When possible, we should try to ensure that people with dementia wait at least one hour after meat consumption before eating dairy products. This requirement, however, should be waived if necessary for their nutritional intake.
Kosher Food: When a person with dementia needs to live in an assisted living facility or other residence, one should provide them with kosher food, preferably in a facility that is equipped to regularly handle such requests. When this is not feasible, it may become necessary for them to be fed non-kosher food that fits their health needs. Please consult with local rabbis and Jewish community social workers to explore the various options.