Project information

Incorporating dementia care in our hospice

We want to make our hospice a ‘dementia friendly’ hospice. We will give staff dementia training, appoint a dementia lead and create a calm physical environment to enable us to offer high quality care, compassion and understanding to patients who have dementia in addition to a terminal illness.

January 2018 - December 2018

Charity information: St Peter & St James Hospice

St Peter & St James Hospice logo
  • Need


    Sussex has the highest prevalence of dementia in the country and new cases are estimated to grow by 20% in the next five years. Up to 70% of people with dementia are living with at least one other serious health condition and we are seeing increasing numbers of patients who have dementia in addition to their terminal illness. Our staff need the skills and resources to manage end of life care for people who may not understand their situation, as well as feeling frightened, anxious and confused.


    We will be prepared to meet the future challenges of dementia. Increasing our staff’s knowledge, skills and understanding of dementia, and making our physical environment dementia friendly, will improve the end-of-life care & support we can offer patients who have dementia alongside a terminal illness. Our hospice will be better prepared to recognise dementia symptoms in patients and meet the specific challenges of ensuring their illness and their dementia are addressed in a holistic fashion.

  • Aims

    Aim 1

    To help patients with dementia live well at the end of their life.


    » Ensure patient’s care plan considers both their illness and their dementia, and how these might co-exist and react.
    » In year 1 up to 40 staff will undergo a ‘dementia experience tour’ so they have a better understanding of dementia from the person’s point of view.
    » 40 staff will receive basic dementia training, increasing their knowledge and skills to meet dementia patients’ clinical and social needs.
    » Utilise the hospice’s garden setting and introduce multi-sensory, and other dementia focussed experiences and activities, to improve quality of life.

    What success will look like

    Patients enjoy the best quality of life remaining to them. They are calm, stimulated and involved, and have their medical needs understood and met.

    Aim 2

    To create a calm, safe, dementia friendly 'physical' environment within our hospice.


    » Refurbish one hospice bedroom to meet the specific needs of patients with dementia eg appropriate lighting, flooring, colour, furniture.
    » Place clear signage and landmarks in main areas of hospice to help orientation and way-finding.
    » Ensure rolling refurbishment of hospice building considers needs of patients with dementia.
    » Ensure all staff are aware of dementia safety issues and actions to take eg if a patient wanders.

    What success will look like

    Patients with dementia feel safe in the hospice and respond by participating in social interactions and acting independently where possible.

    Aim 3

    To ease decision making for patients who have dementia in addition to a terminal illness.


    » Training for a Dementia Lead Nurse will include skills for effective communication with dementia patients, and their families.
    » Dementia Lead Nurse will guide development of appropriate care plan with patients. identifying communication tools eg pictures, timing, equipment.
    » Staff will use patient’s care plan to identify which decisions the patient can make and when / how to talk with them.
    » Families will have a greater understanding of patient’s ability to make decisions.

    What success will look like

    Patients will be supported to make decisions where able, but not appear overwhelmed by choices and questions or put themselves at risk.

    Aim 4

    To reduce agitation, confusion and stress for patients who have dementia .


    » Hospice staff will undergo a ‘dementia tour’ to better understand dementia, leading to changes in their practices and attitudes.
    » Provide dementia ‘tools’ (eg fiddlemuffs, companion toys, memorabilia, games) to stimulate patients and reduce boredom and agitation.
    » Ensure dementia is recognised, and clinical decisions and care plans address the patient holistically, taking the impact of dementia into account.
    » The patient’s need for stimulation, emotional or spiritual care, alongside clinical care, is identified and met.

    What success will look like

    Patients are calmer and display less signs of agitation, confusion and boredom. Families are less stressed observing their loved one.

  • Impact


    • The hospice will be known as a ‘dementia friendly’ hospice.
    • We will be better equipped to identify and support patients with dementia and a terminal illness, and ensure they receive high quality, appropriate end-of-life care.
    • The hospice’s capacity to meet the growing challenge of caring for patients with dementia will be increased.
    • Success will be demonstrated through data collection, feedback and observations of change against our current baseline.


    The main risk is high demand for services and having the capacity to meet this demand. Other risks are lack of funding and resources. By introducing a dementia friendly approach now, and increasing our knowledge, skills and resources, the hospice will be well placed to learn lessons and develop its future dementia strategy based on changing demand and changing practice. We will also work closely with local service providers so we are aware of local trends and funding for dementia.


    Our report will detail how the hospice is meeting the challenge of caring for patients who have dementia in addition to a terminal illness. The report will look at the achievements, challenges and lessons learnt, and include data on patients cared for and staff trained as well as case stories.

  • Budget

    Budget - Project Cost: £40,000

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      Amount Heading Description
      £7,770 Capital Signage, room refurbishment, lighting, dementia 'tool's
      £2,000 Training Training & 'dementia experience tour' for staff
      £25,500 Salary Salary for Dementia Lead Nurse (full time position)
      £4,730 running costs project running costs, contribution to overheads & Head of Nursing management
  • Background


    We have been providing end-of-life care to our local community of 200,000 people since 1975. Mid-Sussex is a mixed rural and urban area and 18% of the population are over 65. Sussex has the highest prevalence of dementia in the country and we are seeing increasing numbers of patients who have dementia alongside a terminal illness. We need to raise 83% of the hospice running costs through fundraising, only 17% comes from government funding. We have fantastic support from our local community.


    Local people who have dementia (diagnosed or undiagnosed) alongside a terminal illness will be the primary beneficiaries of this project. Over 80% of our patients are over the age of 65. Their families will also benefit knowing their loved ones are in a safe, calm environment and are receiving excellent care. Many of our staff will benefit from training and increasing their knowledge and skills and the hospice’s expertise in dementia care will increase, benefitting the community.

  • Why Us?

    Why Us?

    We are the established, local hospice, providing end-of-life care to the community in Mid-Sussex. We already have the skills and resources to offer the best end-of-life care to people with a terminal illness, helping them achieve a good quality of life, experience care and compassion, and die in the place of their choice. With some training and refurbishment, we can extend our care in a cost effective way to meet the very specific needs of growing numbers of patients with dementia.

    Read more about the Charity running this project.


    Anne Jackson

    Head of Nursing. 23 years cancer care, 2 years in hospice end of life care. Identified need for dementia skills & will manage project.

    Sally Stubbings

    Sister. 20+ years as palliative care nurse at hospice. Recognises increasing need for dementia skills and care plans. Will be Dementia Lead Nurse.

    Carol Holmes

    Senior Healthcare Assistant. Brings many years’ experience of caring for dementia patients in the community to her work in our hospice.

    Barbara Williams

    New Chief Executive. 20 years in voluntary sector. Strategic thinker & views dementia care as critical to new hospice strategy.

We are seeing increasing numbers of patients who have dementia alongside a terminal illness. To enable us to offer the best possible care and support to patients with dementia, we need to ensure our staff have a good understanding of dementia and that our environment is dementia friendly.

Anne Jackson, Head of Nursing & Clinical Care, St Peter & St James Hospice