The stimulus for this service came out of frustration with existing dementia care services.
Dying in the UK is increasingly concentrated in the over 80s: cancer, long-term conditions and dementia are becoming the main causes of death.
But people with dementia rarely benefit from the expertise concentrated in hospice care. Mental health services may have lost contact with people as dementia advances and this may contribute to the many stories of people and families experiencing a bad death and inappropriate use of services.
The initial proposal for a hospice-based dementia team was formulated by a steering group, informed by consultation with people from other agencies, and discussed with and agreed by Tameside and Glossop CCG. Funding from the CCG has now been designated recurrent, following ongoing evaluation of the project over the first two years.
The small team offers outreach therapy and support to individuals with dementia. It works with other agencies in education, training, support and learning and has helped to improve outcomes and service usage.
We drew on the experience of others and designed our service with input from professionals involved in the care of people with dementia in the community, care homes and hospitals. We have also learned and modified our approach through study days and workshops involving people with dementia, their carers and a wide spectrum of others.
There has been interest and strong support from the hospice board and the dementia service is established as a component of the hospice service, reflected in the redesign of the referral form, website and involvement in daily referral meetings.
Willow Wood was presented with the Hospice UK Innovation in Clinical Practice award in 2013, for the dementia service and it has gained strength since then.
Referrals
There have been 260 referrals to the service in the three years since it was set up in July 2012.
The criteria for referrals, which are taken from any health or social care professional, are that the person has dementia (though a formal diagnosis is not required) and existing support needs to be increased.
Referrals have fallen into three categories:
- Those thought to be in the last 6 to 12 months of life.
- Individuals with unresolved symptoms or unsatisfied needs, not within immediate risk of dying but benefiting from a palliative approach.
- People with a diagnosis of dementia who want to make provision for the time when they may lose capacity in the future and want to leave instructions regarding their future care.
Response times to these referrals have ranged from 0 to 20 days, with a median of 8 days for the end of life referrals.
All but two of the local GP practices, and some just over the borders of other CCGs, have either referred to the service or acted on recommendations made by the specialist nurse or psychiatrist.
At the point of referral, patients have been located in a variety of settings; 24% at home, 34% in a residential home, 31% in a nursing home and 11% in hospital.
Some patients have only made contact with the service a few days before their death, whereas others have been in contact with the service for a couple of years.
Impact on symptom control and death
Those known to the service have experienced a reduction, on average, of 3.6 in their Pain score (assessed using the Pain in Advanced Dementia Tool) and a reduction of 17.4 on the Neuropsychiatric Inventory, which is a measure of non-cognitive symptoms of dementia (including symptoms of distress).
Of the 260 patients referred to the service since July 2012, 132 are known to have died; a total of 98 of the people who died were said to have experienced symptom relief.
Out of the 132 deaths, 102 died at their usual place of residence and 102 were described as having a ‘peaceful death’, wherever this occurred.
Of the 28 who transferred to a different location before death, three went to a nursing home for palliative care and three to the hospice. The others were admitted to hospital, sometimes for appropriate reasons, such as bone fracture, other times in contravention to the wishes stated on an advance care plan.
Fifty two people had advance care plans initiated by the specialist nurse.
Hospice hosted dementia network meetings
In 2014 we set up dementia network meetings, held every other month, for professionals concerned with the care of people with dementia.
These occur in the hospice’s orangery and ensure good practice and concerns can be shared among a range of professionals including GPs, mental health professionals, care home and voluntary organisation staff. It also provides an informal forum for discussion of issues that come to the attention of members of the network. More details of this can be found in our article in the European Journal of Palliative Care(1).
Education and training
We have held and participated in education sessions for social carers through the Tameside Consortium and with the End of Life Education Facilitator’s Six Steps training.
Within the hospice, training sessions around end of life dementia care and altered perception and communication as dementia advances have been held.
The first session for domiciliary carers from an agency who commonly care for those approaching the end of life with dementia is planned for August.
Regional and national presentations
Members of the team have presented at both regional and national conferences to publicise the work we are doing and to encourage others to think about the palliative care needs of people with dementia.
We have also had articles on this theme published in peer reviewed journals such as the Journal of Dementia Care, the European Journal of Palliative Care and the Nursing Standard, to bring the special needs of people with dementia to the attention of a range of healthcare professionals.
Future plans
We aim to gain funding to expand the team so that a second nurse is employed to increase availability and cover holidays and sickness. This would also enable nursing staff to increase training undertaken to include more care home and domiciliary care staff and provide more support to family carers following bereavement.
References
- Tapley M, Regan A, Jolley D. A UK hospice plays host to a local network of people involved in dementia care. European Journal of Palliative Care. 2015; 22(4):165-168.
Applications are now open for the Hospice UK Awards 2015. There are awards for innovation in care, income generation and volunteering, an award for Volunteer of the Year and the Anne Norfolk Lifetime Achievement Award.
The awards will be presented at this year’s Hospice UK conference. All winners receive a glassware award and a one-day free conference place. The deadline to enter the awards is 8 September. Find out more on the Hospice UK website.
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