Steph Booth, the journalist and champion for people and carers living with dementia, today (26th March) launched the Irish Hospice Foundation’s (IHF) three-year Changing Mindsprogramme which seeks to improve the end-of-life experience for people living with dementia who are on their final journey.
Ms Booth’s husband, the actor Tony Booth and father of Cherie Blair, has Alzheimer’s disease which is a type of dementia. She has written extensively about the challenges they both face in living with the condition. While now living in the north of England, the couple lived in Co Cavan for a number of years.
Ms Booth launched the programme when she spoke at a seminar entitled “Palliative Care Needs of People with Dementia – Building Capacity” at the University of Limerick. The day-long seminar was one of the first events to be organized under the Changing Minds programme which will run from 2013-2016. The programme has been allocated an investment of €3m and is co-funded by The Atlantic Philanthropies, a limited life foundation and the IHF.
Dementia affects about 41,000 people today. In the next 30 years, the number of people living with this condition is expected to reach nearly 141,000. About 34% of Irish people with dementia currently live in residential care and almost one in five acute medical beds are occupied by people with dementia. Just under two thirds of the residents of residential care settings have been diagnosed with the condition.
Ms Booth stated: “Through my writing I have been trying to raise the profile of the issues around dementia. I have also tried to say to other carers ‘you're not on your own’. Difficult questions and increasing problems have to be faced by us all. Unlike other illnesses where the sufferer may still be able, even towards the end, to plan and make choices for their care, that would clearly not be the case for those with dementia. When is the right moment to have the discussion? It is good to know that the Irish Hospice Foundation through this Changing Minds programme is there to help us to face up to and achieve this. The questions to be confronted are both practical and moral. The programme is exciting and innovative. Dying well with love, dignity and respect is a fundamental rite of life.”
Sharon Foley, Chief Executive Officer of the IHF, commented: “The Irish Hospice Foundation is committed to looking at the end-of-life needs of particularly vulnerable members of our society. We aim to promote and support better end-of-life care across all care settings and for all illnesses. As a poorly understood and highly stigmatised condition affecting an increasing number of people, we looked to contribute to the development of services for people living with dementia. We want to see palliative care for people with dementia prioritised and developed in all care settings and more people supported to be able to die well at home. We are also looking to increase our focus in community residential care settings. About 66% of these residents have a cognitive impairment so our programmes for care settings will have an increased dementia focus.”
She continued: “At the end of the programme, we hope that the end-of-life care for people in all healthcare settings is developed and specifically the needs of people with dementia will be better understood and supported. Finally we want to see increased public discussion on death and dying with more people, including those with dementia, engaging in early advance planning”
Marie Lynch, Programme Development Manager, commented: “People dying from and with a dementia are an especially vulnerable group. Their end-of-life care needs may be further complicated by the absence of staff specifically trained in end-of-life care and dementia care. Changing Minds is about both principles and practice - promoting quality end-of-life principles and embedding good practices into the care of people living with dementia. It aims to positively transform public awareness and professional attitudes.”
Under the Changing Minds programme, the IHF will:
- Engage with healthcare leaders in statutory and voluntary services to generate support for developing excellent end-of-life care for people living with dementia
- Educate and develop the end of life care and communications skills of staff who are caring patients with dementia in all care settings
- Promote good models of care including support guidance and information
- Introduce systems to support the palliative care needs of patients with a life limiting disease at home including those with dementia
- Introduce useful tools and resources used in acute hospitals into other healthcare settings where staff and patients with dementia will benefit
- Encourage a national conversation about the end-of-life and encourage all to engage in early advance planning.
- Adapt the Hospice Friendly Programme for Residential Care Services for Older People
As part of the Changing Minds programme, a series of seminars are being organized around Ireland in an effort to raise awareness among health and social care professionals of the needs of patients and families living with dementia and some initiatives that are being rolled out to meet those needs. Other seminars are planned for the North East and South East later this year.