Loss and Grief in Dementia

Guidance and Resources
What gives meaning, purpose and value to me in my life?
“I connect at the deeper level of spirituality, so I treasure your visit as a ‘now’ experience in which
I have connected spirit to spirit. I need you to affirm my identity and walk alongside me.
I may not be able to affirm you, to remember who you are or wherever you visited me. But you have
brought spiritual connection to me; you have allowed the divine to work through you. This can
happen across cultures and languages, and is a very meaningful depth of communication, one
that perhaps we should all strive for” (Christine Bryden, self-advocate living with dementia in (109))
People with dementia may get a sense of meaning, purpose and value from their faith, their family, or
from other things which support them to explore and express their spirituality. Some of the things you
may consider when exploring spirituality with a person with dementia are:
• Current religious attachments /Religious symbols (121). People, for whom faith practices have
been important in their lives may be assisted to cope by accessing faith activities (such as attending
church/ prayer meetings etc) (128). Both religiousity and personal spirituality have been related to
maintaining a good quality of life for people with dementia in many studies (128–131).
• The person’s past activities – social, cultural, religious, spiritual.
• Past strategies and coping mechanisms.
• The person with dementia’s interpretation of the dementia experience.
• The person with dementia’s sense of hope and what gives them hope.
• The person with dementia’s sense of connectedness with others.
• The presence/ absence of spiritual / religious literature/ rituals/objects and practice.
• Childhood memories and life story work which can support the person to engage in reminiscince
and explore the meaning they attach to their experiences (132).
• Art therapy (133).
• Outdoor activity (134).
• Meditation (135).
What do I need to be at peace with myself, others and the world?
Bycok (136) identified some of the tasks which people at the end of their life may wish to achieve in
order to be at peace. Some of the commonly listed tasks are having as a sense of completion of worldly
affairs/ responsibilities, a sense of meaning about one’s life, forgiving one’s self and others, acceptance
of the finality of life and a surrender to the transcendent or ‘letting go’. There may be some practical
things you can support the person with dementia to do to assist them to achieve peace, for example
they may be concerned about a family member/ practical issues in the home. They may be concerned
about their future and what the plan is for them particularly in relation to their wishes in the event of illness
and death. Having plans in place can be important for people with life-limiting illnesses to be at peace.
As a healthcare staff, you may be able to support this planning by:
• Facilitate discussions with the person in relation to their future and end-of-life care and supporting
them to engage in advance care planning if it is their wish to do so (see guidance documents 1
and 2 in this series for further information).
• Address the person’s hopes, fears and concerns – use active listening and support emotions.
Seek support from colleagues or more senior members of healthcare staff as required.
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