Like many hospices St Giles, regardless of our strategy, predominately supports people with cancer. Through partnerships and innovations we are seeing increased access for people with non-malignant diseases, in particular respiratory and neurological conditions. One of our challenges has been to determine our approach to hospice services for people living with dementia.
During its research, the Commission into the Future of Hospice Care (1) “heard a passionate and convincing call for the engagement of hospices in end of life care for people [with dementia] given its high symptom and disability burdens and the challenges faced by carers of people with dementia.” (p17)
The Alzheimer’s Society and Marie Curie report (2) describes increasing evidence suggesting that people with dementia are not identified as requiring palliative care, that their end of life care needs are not identified and that this leads to reduced access and experience in comparison to other terminal illnesses. Their report suggests that the “death and dying phase of dementia remains the forgotten aspect of what has been referred to as a silent epidemic.” (p5)
Working with local partners
In exploring the issues relating to end of life care for people with dementia, we developed a dialogue with a leading local GP in Gnosall, Staffordshire.
Dr Ian Greaves developed a primary care based memory service which includes a non-clinical facilitator role. The facilitator supports people with memory concerns, through a holistic assessment to diagnosis and follows through post-diagnostically. This model of care has received awards and the attention of NHS England and health ministers.
Dr Ian become the founding partner of GP First, a federation of 41 GP practices and approached St Giles to partner in the delivery of the non-clinical support workforce (care facilitators) in a fully-funded pilot scaling up the Gnosall model. We partnered with Douglas Macmillan Hospice through a new jointly owned special purpose vehicle.
The Memory First service launched in January 2014 and as at the end of February 2015 had undertaken home visits and holistic assessments with over 1,500 people with memory concerns. Many were discharged at this point, with signposting or actions for primary care follow up, 641 went on to attend a primary care based memory clinic and just over 200 have received a diagnosis of dementia.
From St Giles’ perspective, delivering this service enabled us to provide an integrated primary care service – the care facilitators have honouree contracts with the GP practice with access to update the patient record.
Also, care facilitators are jointly branded GP First and either St Giles Hospice or Douglas Macmillan Hospice, therefore increasing hospice reach.
The service has allowed us to grow our understanding of dementia alongside our increasing knowledge via St Giles Care Agency which supports a number of people with dementia.
Our main interest however, was to work with GP First on developing the service to improve end of life care for people with dementia. We are now developing this concept further.
Developing a dementia strategy
Our dementia strategy has been emerging as a consequence of our involvement in the Memory First service. St Giles has for the first time, following consultation, specifically mentions dementia in our strategic aims for 2015.
We have internal Dementia Friends Champions and have been delivering Dementia Friends training to our staff, volunteers and partner organisations; this is becoming part of our St Giles induction.
We also offer dementia e-learning to all staff and have just started delivering an accredited vocational qualification (QCF) in dementia. We have included elements of these into other teaching programmes combined with end of life.
A ‘dementia debate’ is being held soon as part of our ongoing internal engagement and other workforce development initiatives are at an early stage of planning.
We have also joined our local Dementia Action Alliance, with one of our three pledges for all of our shops to become Dementia Friendly, in addition to our other buildings where possible.
Advance care planning
One of the particular issues for people with dementia is the need for early conversations regarding end of life care wishes – this is a specific need we can support.
Our community engagement lead visited a local dementia group to tentatively see whether they would be open to St Giles running some ‘planning ahead’ workshops. While we were anxious about how open the group would be to hospice involvement, there was almost overwhelming support and interest, and workshops are running during Dying Matters Week.
All patients within the St Giles Memory First locality who have received a diagnosis of dementia will be invited to the workshops so that those who want support in ‘planning ahead’ are able to do so.
We are not specialists in dementia clinically, we aim to work with partners to support the dementia challenge we face nationally. We need to consider where we can make a contribution for example in having end of life conversations, supporting carers, promoting holistic care in addition to providing high quality care. Our existing community services and our work with care homes in particular needs to become ‘dementia confident’.
The engagement process internally and externally should not be underestimated when developing a hospice dementia strategy – that is an article in itself.
St Giles’ CEO, Peter Holliday believes that “In the second half of the twentieth century, communities supported hospices because of their fear of cancer but in the first half of the twenty first century it is fear of dementia which will drive the direction of community support.”
It is predicted that 1 in 3 of us will die with dementia which will include many of our traditional patients. Therefore, while hospices can choose how they engage with the dementia challenge, it cannot be ignored if we are going to continue to meet the needs of our local communities.
Emma will be speaking at a conference this Friday, hosted by Hospice UK and Hope for Home, which will focus on the hospice response dementia. This event will also see the launch of a new guidance document outlining the first steps hospices can take to meet the dementia challenge.