End-of-life tools for dementia
Written by Dr. Inbal Ma'in, specialist in geriatrics and dementia, medical director of Sabar Refufa
End of life inDementia diseases It is a delicate and complex stage. For many families, this is a period that is accompanied by feelings of confusion, uncertainty and sometimes guilt. It is important to understand that this is a natural part of the progression of the disease, and not a "failure" of the family or the care team. At this stage, the emphasis in treatment shifts from focusing on prolonging life, to supportive care aimed at maintaining comfort, preventing and alleviating suffering, to providing support and assistance to the family in accompanying their loved one with professionalism. Respect and compassion.
On this page, we have compiled information about typical signs in the final stages, supportive and palliative care, tools for families, and more.
To download a more detailed guide (PDF) on end-of-life care in dementia – click here:
Typical signs in the final stages
To be better prepared, it is worth getting to know the Expected changes:
- Gradual decrease in the ability to eat and drink.
- Difficulty swallowing and risk of inhaling food or choking.
- Decreased mobility - prolonged bed rest, loss of mobility.
- Lack of control over bowel movements.
- Occurrence of recurrent infections, mainly in the respiratory and urinary tracts.
- Decreased ability to communicate, to the point of unresponsiveness to the environment.
- Gradual decrease in strength and weight.
Important Information: These are not signs of poor treatment, but a natural stage of dementia.
Supportive and palliative care
Sometimes in the final stages of dementia, when the patient is bedridden and communication with him declines, they choose to move to a phase where the main goal is comfort and well-being. The intention of comfort and well-being is not to stop treating but to focus on:
- Symptom relief: Administering medication for pain, anxiety, or shortness of breath.
- Bed care: Posture changes, keeping skin dry and clean, preventing pressure sores.
- Nutrition and fluids: Providing soft food and fluids in an amount and form that is comfortable for the patient, without forcing or coercing.
- Treatment of infections: Sometimes providing local treatment (cutaneous: ointments and dressings. Dehydration: administering subcutaneous fluids, pain: painkillers) is better than antibiotics or hospitalization.
- A supportive environment: Maintaining the familiar environment, a pleasant and relaxed atmosphere with warm physical contact, familiar music, and the presence of family members.
- Emotional and spiritual support: Meeting the personal and religious needs of the patient and his family.
Medicine collection
Sabar Refuva operates with the belief that the home is the best therapeutic space for a person, when their medical condition allows it, and when they wish to remain at home. Sabar's home hospitalization system operates with full availability for the patient 24/7, and includes multidisciplinary teams in various fields (doctors, nurses, social workers, complementary health professions), operating nationwide.
Practical tools for families
The patient and family are at the center, and it is important that you are equipped with the appropriate tools:
- Conversation with the treatment team
Don't be afraid to ask simple questions:
– What is really expected?
– What is possible and what is unnecessary?
– How do we know that the treatment is making it easier? - Preparing for medical decisions
– If there is a durable power of attorney or advance medical directive, they must be presented to the team.
– If not, it is worth trying to understand what the patient's wishes were in the past. - Organizing at home
– Take care of basic equipment: a mattress to prevent pressure sores, appropriate absorbent products, and medications for relief.
– Ask for guidance from the nursing team regarding daily care (body and oral hygiene, feeding, changing position, etc.). - Division of roles in the family
– Determine who is responsible for daily physical care, who is in contact with the team, and who coordinates visits from relatives. - Protecting the family itself
– Take breaks, share with other family members, ask for help from friends.
– Don’t neglect your health. An exhausted caregiver has difficulty helping the patient.
Emotional and community support
- EMDA Association- Offers support groups, and a telephone support and counseling center 8889*.
- Medical and palliative teams: Can provide professional response 24/7.
- Spiritual/religious support: For many families, talking to a rabbi, other religious leader, or spiritual guide provides strength during this time.
In conclusion
The end of life with dementia is a difficult but also significant chapter. The choice to focus Comfortably, respectfully, and compassionately – and not just by prolonging life at all costs – allows the family to accompany their loved one in a humane and respectful way.
You are not alone on this journey: there is support, there is guidance, and there are tools that can help you go through it together.