Understanding end of life care for people with dementia
“When a person with dementia is approaching the end of their life, it can be a very difficult time for them and the people around them. You might not want to think or talk about many of these things. You might find reading this upsetting. But having these difficult conversations with the person, and planning ahead, can ensure the person’s needs are met at the end of their life. It will also help if health and social care professionals communicate well now, with you and with each other.
Planning for the end of life is important for anyone who has a life-limiting condition. For a person with dementia, it is important to try and have these conversations as early as possible, while they can make decisions forthemselves. If they don’t feel ready to think about the future at this time, getting to know their values, wishes and beliefs more generally can help in the future when decisions need to be made on their behalf.”
“This model of drama/education can be really effective
in raising specific issues and changing views.”
Ideas collated from evidence based research and lived experience:
- The importance of preparing for death. (Advance care plan & Best Interest decisions)
- Recognising the signs of someone approaching end of life
- What is a good death? And for whom? It means different things to different people.
- Dignity, Compassion & Respect “Don’t do anything for me without me”
- Additional challenges of dementia to end of life care – unpredictable progression
- Understand/De-mystify the physical processes of death
- Understanding of Terminal agitation, terminal lucidity, Lazarus reflex
- The importance of hydration – keeping the person with dementia comfortable
- Impact on feeding, swallowing & lack of appetite. Inappropriate referrals. (Favourite flavours & enjoyable foods)
- Clarification of language
- Identification of pain, pain management and how pain relief is delivered
- Impact of complex families. Boundaries & Behaviour management. Who are the “significant others”
- The importance of clear, open communication between all parties and an acknowledgement about what is happening.
- Interface with different health professionals & social services
- Making the death experience as comfortable as possible.
- What to expect at the death bed
- Death is not a medical illness.
- Sensory connections (smells, sounds, touch)
- The importance of the environment – personal histories
- Place of death
- Support for Care givers both before and after their family member dies
- Emotional & sensory comfort offered by pets, children, family, friends
- Involvement of children – facilitating understanding of what is happening
- Support for the grieving process both before & after death
I am so pleased that you are putting together
another play that will help people to understand
the conflict, difficulty, compassion and joy
that this emotive topic brings with it.”
Planning for the next phase
Development of the script, to be rehearsed and showcased to Arts, Health & Education professionals and other interested parties for the purpose of evaluation & feedback.
Final script in place, informed by evaluations & feedback from the Showcase. Wishes Fulfilled will then be rehearsed with full production values and toured nationally alongside our other 2 dementia plays “Grandma Remember Me? and “Wishes Fulfilled”