Background Dementia is a progressive neurodegenerative disease. There are some treatments that will alleviate some symptoms but dementia is not curable and is a terminal illness. It is estimated 850 000 people are living in the UK with a diagnosis of dementia and 670 000 are people acting as primary carer for a loved one with dementia (Alzheimer’s Society, 2015).
UK hospices are being encouraged to engage in the agenda of dementia care for people who are palliative or end of life.
Aim To present the independent, interim evaluation of a service for people with dementia in a hospice setting.
Methods A qualitative evaluation approach was used within a participatory action research framework, incorporating several phases across the general participatory action research (PAR) framework (Brydon-Miller, 2004). This cyclical process was adopted, alternating continuously between enquiry and action, and between practice and innovative thinking (Hart & Bond, 1995). This alternating process enables implementation of change and ultimately generation of theory (Greenwood, 1994). Six focus groups (n=43) and a survey were conducted to formally evaluate the implementation of the dedicated support within a specialist hospice in the UK.
Results The PAR approach was a useful framework to promote ongoing change within a dynamic hospice environment. Interim results found that the Admiral Nurses project provides a useful template to inform change within a hospice environment; demonstrate the breadth of impact of the service from a patient, family and professional perspective; and highlight how such an initiative can be the catalyst for effective strategic and operational change.
Conclusion The numbers of people with dementia is increasing world-wide, and issues around effective and specialist support are challenging. Expanding the hospice role to include patients with dementia requires investment in dementia specialist nurses to complement existing hospice expertise.
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