By Gina Awad
My name is Gina and I am a Dementia Campaigner. There was and still is the need for Dementia Friendly Communities to raise understanding and awareness around an illness which touches so very many of us directly or indirectly and is often misunderstood. That is why I founded The Exeter Dementia Action Alliance 3 years ago which has gone from strength to strength. I am also a Death and Dying Activist but this is not about me! What it is about is planning for end of life and to illustrate the importance of doing this through Teresa’s story. You can see and hear Teresa here
How can we plan to live our lives in the way we would like until the very end? Many of us dream of spending our final days at home, in peace and comfort, surrounded by loved ones who care for us compassionately until our last breath. Unfortunately, many of us end up dying in a hospital or a care facility unable to exercise full choice and control over what we want and don’t want. What follows is some background and information which I hope will help.
Aly Dickinson who is an End of Life Doula with Living Well Dying Well and I connected two years ago through our mutual interest in raising literacy and conversations around death and dying. A few months later we co-hosted the first Death Cafe in Exeter. We have now begun to facilitate them bi-monthly at Exeter Library. We believe that combined with the inevitability of death, dementia will touch many of us at end of life. Recent statistics show that there are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051. 225,000 will develop dementia this year, that’s one every three minutes.1 in 6 people over the age of 80 have dementia. 70 per cent of people in care homes have dementia or severe memory problems. There are over 40,000 people under 65 with dementia in the UK (Alzheimer’s Society)
In the work I do I see every day the importance of planning for end of life whilst we have the mental capacity to think and talk about it. To say clearly and let others know what our preferences are before we lose the ability to make and articulate our decisions and choices – what we want and don’t want and who we would like to speak for us when we are unable to speak for ourselves.
Recently I was invited to deliver a ‘Dementia Friends Session’ to the Living Well Dying Well South West Network of End of Life Doulas. Doulas support people with a life limiting illness and those they love. Their work includes Advance Planning for End of Life and I have been through their training to do this work. It provided much food for thought about how to support people at end of life living with dementia. This led us to considering how best to approach Advance Planning for End of Life in these circumstances.
Whilst we understand there is currently no cure for dementia, having important, honest conversations about planning ahead whilst we still have the mental capacity to do so is a crucial part of the process. The question is when and how can this be facilitated when many do not want to contemplate the subject let alone discuss it? That’s where we can support the person and those they love to have the conversation sooner and before it is too late.
I have great empathy when a dementia diagnosis is received and the thought of how on paper these processes of planning for the future can appear incredibly complex. There is much to read and assimilate and I often hear how the emotional response is the biggest challenge. We, however, can support the individual and the people they love to talk about, plan and express how they would like their life to be until they die. This can include where the person would want to be cared for; how they would like to be cared for and by whom – likes and dislikes; medical interventions they may want to refuse; wishes on organ donation; funeral arrangements and so on.
I relay a personal story here of a lived experience of how a plan was made, written down and provided to all those responsible for an individual’s care. I have permission to share it from my dear friend Teresa who, at the time of writing, is dying and is having palliative care for breast cancer, this has now metastasized to her brain which may affect her mental capacity going forward.
Teresa attended the first Death Cafe Aly and I hosted 2 years ago. At that time, she had no health issues but was curious – wanting to know more about what death and dying entailed, to share her concerns and fears and to get information on options and choices. Less than a year later Teresa was diagnosed with incurable breast cancer. To set the context Teresa has been a dynamic business woman for much of her working life as well as a loving wife, mother and friend. Her previous interest in being able to freely talk about death and dying and attendance at Death Cafes inspired her to consider how she would be able to prepare for and make decisions as her dying and death approached. She then proceeded with the support of Aly and myself to prepare her advance plan for end of life. This included her Advance Decision to Refuse Treatment (ADRT), her wish to be cared for at home for as long as possible, as well as the details of how she wished to be remembered, her legacy and how she would want her life to be celebrated.
Aly and I spent time understanding Teresa – her life story, values, beliefs and what was important to her. We demystified all the jargon and complexities of Advance Planning for End of Life so that we could support Teresa to create her plan. This could (and was) given to her family, those she loved, her Clinicians and people caring for her so they could understand and respect her wishes and choices. Teresa said ‘When my plan was done I breathed a sigh of relief. I thought it would be difficult to do but by having a conversation with Gina we were able to capture together what is important to me. – what I want and don’t want. Now those around me understand. I knew it had to be done so that I could have choice and control and now I can get on with living each day as it comes’.
Teresa has said that by creating her advance plan she feels empowered, more in control of her own destiny and this has also provided comfort for her family who can now understand and respect her wishes. I certainly feel humbled to have been part of this process and liberated that as her friend I have been able to offer practical and emotional support through the myriad of twists and turns that a terminal diagnosis reveals. Teresa wanted her experience to be shared with the aim of encouraging more of us to make a plan.
We don’t know when anyone of us may lose the ability to make decisions because of say a stroke, a brain injury from an accident and so on. With a dementia diagnosis, the capacity to make decisions about end of life care, wishes and needs will undoubtedly diminish leaving what may be difficult choices to family, friends or significant others and the medical profession. How do we really know what that person may want or would have wanted unless they have told us?
To this end I would urge us all to consider creating an advance plan, I have done mine. It does not have to be complex and can be updated at any time but for all concerned and ourselves it means we can be in control of our life as well as our death. In the future, I would like to see us raising these conversations with more of a sense of ease. This will only happen through education and awareness which is what I intend to continue doing.
On Saturday 17 February from 10am to 4pm Aly and I are running a Seminar on Advance Planning for End of Life at Exeter Library, Castle Street EX4 3PQ – how to do your own plan of where and how you want to be cared for at end of life. We’ll be covering and providing information on Advance Decisions to Refuse Treatment, Do Not Hospitalise, Funerals, Lasting Power of Attorney, Wills, Organ Donation, Mental Capacity and Dementia.
Donations of £10 would be very welcome to cover the costs but please do not let lack of funds prevent you coming along. We thank Emily Macaulay for her kindness of monies to help cover room hire costs. To reserve a place please email Alizoun@alid.co.uk or call on 07887 840663.
If you’d like support to complete your own Advance Plan For End of Life you can contact Aly or me by sending an email to Alizoun@alid.co.uk. We have also recently set up our Facebook Page which will provide information, details of what we are up to and dates of forthcoming Exeter Death Cafes please like us on
We are very grateful to Teresa for allowing us to share her personal story.