Dying on Our Own Terms: A relational caring end-of-life dementia framework

• Learning about the PERSON with dementia beyond the dementia diagnosis
• Understanding and honouring the person’s preferences for care at the end-of-life, including: linguistic and cultural preferences; relationships with a higher being and associated religious and spiritual practices; being alone or with others; and other wishes of the person living with dementia

• Respecting autonomy and the right for the person living with dementia to have control over the dying process, including removing unnecessary treatments when desired
• Paying attention to the verbal and non-verbal (e.g., body language, facial expressions, etc.) ways the person living with dementia communicates their preferences and experiences and asserts their autonomy
• Educating the person living with dementia and their carers about the substitute decision-maker* role and ensuring the person living with dementia identifies their own substitute decision-maker who knows, respects, advocates for, and communicates their preferences
• Dying with dignity while adapting to changing needs and co-morbidities
• Honouring and celebrating the person’s legacy and personhood after death (e.g., rituals meaningful to the person living with dementia such as celebrations of life, religious/spiritual ceremonies, etc.)

* ‘Substitute decision-maker’ refers to the designated person authorised to make decisions on behalf of a person who is unable to make decisions about their own personal care. Different terms are used in each Province and Territory (e.g., agent, representative, attorney of personal care, power of attorney). For more information, see the Legal Terminology Resource provided by Advance Care Planning Canada.

• Recognising that the person living with dementia can still experience joy at end-of-life, and the importance of providing joyful moments, peace, and fulfillment meaningful to the person living with dementia to them through the end of their lives
• Having/attending to physical, emotional, social, and spiritual well-being (e.g., providing emotional and grief support for the person living with dementia; access to spiritual care providers)
• Prioritising comfort as understood by the person living with dementia (e.g., effective pain and symptom management, considering both pharmacological and non-pharmacological therapies*; addressing fears)

* ‘Pharmacological therapies’ refers to the use of medications. Non-pharmacological therapies are healthcare approaches that do not involve medications, such as music therapy, massage therapy, etc.).

• Learning about the family/others important to the person living with dementia, including their pets, and their needs
• Providing reassurance and emotional support (e.g., counselling, bereavement support) to family members, recognising that grief is an on-going, individualised process with no time boundaries
• Facilitating intimate time between the person living with dementia and others (e.g., family, friends, pets) at end-of-life if desired by the person living with dementia
• Providing knowledge and training for families to assist them in navigating end-of-life (e.g., knowledge of substitute decision-maker role, support at the bedside to help in understanding what they are witnessing such as breathing changes, signs of anxiety/discomfort, what is and is not painful)
• Providing practical supports/resources for family carers (e.g., financial, compassionate work leaves, etc.)

• Providing peaceful, familiar, home-like, surroundings meaningful to the person living with dementia (e.g., presence of comforting elements such as photos, plants, music; access to nature/outdoor spaces; food and smells of food; soft and flexible lighting; soothing auditory environment)
• Providing furniture that supports families to comfortably be present and rest nearby
• Prioritising the social/relational preferences of the person living with dementia (e.g., wanting or not wanting to die alone, who should be there, having pets present)
• Having compassionate, respectful and understanding carers
• Having access to specialised end-of-life care (e.g., hospice, dedicated end-of-life spaces, in-home palliative care, death/end-of-life doulas, and MAiD if desired)

• Ensuring leadership understands and supports relational caring at end-of-life
• Developing supportive policies and procedures aligned with relational caring at end-of-life
• Providing access to time and resources, including volunteers, necessary to provide compassionate relational caring at end-of-life
• Providing access to emotional and grief support for healthcare professionals*
• Creating fulfilling jobs where healthcare professionals feel valued and recognised
• Providing ongoing training and education for healthcare professionals (e.g., dementia, relational caring, death and dying, advance care planning)

* ‘Healthcare professionals’ refers to all formal paid care partners working in the healthcare sector (e.g., personal support workers; nurses; physicians and specialists; social workers, therapeutic recreationists, and other supportive care staff; pharmacists, etc.)