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End-Of-Life Care Planning for People With Advanced Dementia

31 December 2023

Dementia is a progressive disease that develops in stages, and in some individuals, it is characterized by a gradual decline, while others may experience a rapid and sudden deterioration.

Even in this advanced stage, it remains crucial to provide comprehensive care for all aspects of the patient's life:

  • Attend to the patient’s physical requirements and provide care for other medical issues.
  • Take care of the patient’s emotional requirements and respond to stress, emotional distress, and anxieties.
  • Attend to interpersonal needs, as close contact and addressing challenges in emotional regulation are often necessary.
  • Address personal needs by being attentive and sensitive to the social, cultural, spiritual, as well as the religious needs of the patient and their family.

Engaging in advance care planning for the final stage of dementia can partially alleviate the challenges faced by both the patient and their family during this difficult period. Advance care planning may, for example, involve the patient being involved in making decisions at the diagnosis stage regarding their own medical and therapeutic issues. Providing advanced medical guidelines can help ease the challenges experienced by family members, as it allows them to understand the patient’s preferences and act accordingly.

Dementia is a disease that develops in stages and impairs mental and behavioral functions. The final stage of dementia typically has a duration ranging from one to three years. In some individuals, it is characterized by a gradual and long decline, while others may experience a rapid deterioration that can lead to an unforeseen death.

At the advanced stage of dementia, the patient may experience substantial communication difficulties, considerable cognitive impairment, memory loss, difficulty identifying objects and family members, etc. The final stage is challenging not only for the patient but also for their family members.

Planning for the advanced stage of dementia and the end of life may help alleviate the challenges associated with this period.

Treating people with dementia

It is crucial to start planning and address all aspects of the patient's life as soon as they are diagnosed with the condition:

  • Physical needs

    It is essential to continue managing any other medical condition that the patient diagnosed with advanced dementia has to ensure regular medication intake, pain management, treatment of any physical distress, detecting and preventing pressure sores, pains during sleep, sleep disorders, etc.

  • Emotional needs

    It is essential to provide support for the patient with advanced dementia suffering from stress and mental distress, as well as for anxieties and agitation, particularly, when they experience emotional reactions due to confusion and forgetfulness.

  • Interpersonal needs

    People with dementia need close connections with their family and constant assistance to handle emotional self-regulation difficulties.

  • Personal needs

    It is important to be attentive and sensitive to the social, cultural, spiritual, and religious needs of the patient and their family members

For more information on the subject

Making decisions regarding the treatment of a person with dementia

Upon receiving a dementia diagnosis, it is advised for family members, relatives, and caregivers to seek consultation, support, and guidance from healthcare professionals. Furthermore, it is advisable that, at the diagnosis stage, a primary caregiver be chosen together with the patient. At this stage, it is recommended to allow the patient to decide on the methods of decision-making regarding their treatment and ongoing care.

It is recommended that the patient sign advance health care instructions and a power of attorney to prepare for a future state of incapacity. A guardian may have to be appointed according to the patient’s condition.

Palliative care in dementia

Palliative care is a treatment designed to improve the quality of life of a person suffering from a terminal illness, including dementia. The treatment can be prolonged or given only towards the end of life, depending on the person's condition.

More information on palliative care and preparation for the end of life with dementia

Related services and actions

Planning for future incompetence

Nursing care homes

Supporting associations and community

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