Care Improvement and End of Life
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1 Care Improvement and End of Life
2 PM Challenge 2020: Care Homes Improvement in assessments Avoid people with dementia having to go into hospital Greater use of evidence-based training Opportunity to develop new models of in-reach support Care homes engaging and involving the wider community Improving quality of life People with dementia to remain active and engaged
3 PM Challenge EoL All people with a diagnosis of dementia being given the opportunity for advanced care planning early in the course of their illness, including plans for end of life All people with dementia and their carers receiving co-ordinated, compassionate and person-centred care towards and at the end of life, including access to high quality palliative care from health and social care staff trained in dementia and end of life as well as bereavement support for carers A right to stay for relatives at the end of life
4 When are people at the end of life? There are symptoms of later-stage dementia that can signal that the person is reaching the final stage of their illness. These include: Speech limited to single words or phrases that may not make sense Needing help with most everyday activities Reduced eating and difficulties swallowing Doubly incontinent Inability to walk or stand, problems sitting up and controlling the head, and becoming bed-bound.
5 Why is end of life care for people with dementia important? The number of people in the UK with dementia is increasing, with 1 in 3 people over the age of 65 now dying with dementia Despite there being no cure, only 18% of people realise dementia is a terminal illness 1 in 2 patients now beat cancer and survive 10 years or more Dementia life expectancy can be up to 10 years but everyone dies
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9 Terminal trajectory typical of cancer and dementia
10 Acute hospital end of life - dementia Less likely to be referred to palliative care and less likely to receive palliative medication than people who did not have dementia Only 17% of patients with dementia that subsequently died were referred to the palliative care team during their acute hospital admission Unplanned admissions to acute hospitals also negatively impacts on survival times for people with dementia, which were half those without dementia More likely to die during an admission and in the six months after their hospital admission
11 Commissioning for change Audit care homes Improve dementia care Introduce evidence based assessment tools Introduce the Namaste Care programme Reduce admissions to the acute hospital Commission our best dementia care and end of life care providers to work together Share learning and best practice
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13 Improving dementia care Use of Care Fit for VIPS for audit and planning improvements in care Look at activity, training, environment, tools, staffing, nutrition and hydration, advanced care planning and the views of residents and their families Introduce tools such as the Abbey pain scale, PAINAD, 6-CIT and Geriatric Depression Scale Introduce the Namaste Care Programme
14 What is Namaste? Namaste Care is a sensory based programme designed by Joyce Simard for residents in care homes who can no longer participate in traditional activities It is designed to be a 7 day a week programme Meaningful activities are provided with a slow loving touch approach Daily Living Skills are offered with an equally loving approach Delivered in a calm and tranquil environment
15 Namaste Care standards Namaste Care is offered 7 days a week Namaste Care is offered at least 4 hours a day Namaste Care takes place in a special, dedicated environment Residents are assessed for comfort Residents behaviour is monitored Daily Living Skills are offered as meaningful activities
16 Case Study 1 Beryl has a diagnosis of mixed dementia She has limited communication with others Only 1 word is ever used- Birmingham Lack of confidence to socialise with others within the care home Appeared to be very frustrated and anxious within herself
17 Staff had a lack of understanding of the importance of activities, in particular music Staff members having a lack of confidence to deliver activities Lack of confidence in identifying ways in which they can communicate with Beryl Lack of understanding of Beryl s dementia Staff didn t fully understand residents interests/ past history / likes/dislikes Risk adverse Challenges
18 What we did DSW s spent time with staff to help support with understanding Life Story work and the benefits this can bring Each staff member was asked to identify one piece of important information about a person. From this information they were to provide a meaningful activity With Beryl, staff identified she loves music DSW provided a wide variety of activities around music, i.e. music quiz, use musical instruments They also offered Beryl an ipod
19 Following the introduction of an ipod Initially played Le Fabuleux Destin d Amelie Poulain soundtrack for approximately 30 minutes Beryl is now communicating more, asking others: Can you hear this? Listen to this with me this is fantastic whilst clapping her hands and tapping her feet Beryl is now making friends for the first time since moving into the care home Beryl is now smiling
20 Case Study 2 Traditional residential care home setting Difficult transitional period for care staff due to management changeover Staff struggled to communicate with some residents, particularly those with advanced stage dementia Several staff felt uncomfortable acknowledging end of life No Advance Care Plans in place for residents
21 Challenges Time constraints Staff s lack of confidence Fear of discussing end of life Limited understanding of people living with dementia Staff unsure how to approach difficult conversations
22 What we did Delivered development sessions to staff to help them gain a better understanding of End of Life care and the importance of Advance Care Plans Supported staff to implement Advance Care Plans, to residents who wished to have them Supported staff to understand how to approach difficult conversations
23 Since the introduction of ACP s 1 resident who completed an ACP, died unexpectedly a week after completing the document. As a result of the ACP: Staff felt more competent in discussing funeral plans with family and friends of resident Staff felt confident that the residents wishes and preferences were realised
24 Since the introduction of ACP s Staff were able to better support the residents family/friends at a difficult time Family expressed their gratitude to staff as they wouldn t have known all of the information about their loved ones wishes, without the ACP
25 Case Study 3 Challenges similar to previous case studies Traditional residential care home setting Staff lacked confidence in understanding unmet needs, which were often perceived as undesirable behaviour Staff concerned that they were not doing all they could do for their residents
26 What we did DSWs carried out observational visits on existing practice Managers selected staff to train as Namaste Care champions who had expressed an interest in holistic approaches to care including sensory activity DSWs delivered development sessions to staff to help them gain a better understanding of the Namaste Care approach in particular hand and foot massage
27 The outcome Champions identified residents who became agitated in the evenings and often called out, disturbing other residents These residents were offered either hand or foot massage (and sometimes both), in the time period before the agitation usually started This intervention prevented the agitation and stopped the calling out behaviour which was viewed as negative Other residents took an interest and now benefit too
28 Achievements 11 care homes are now part of the Walsall Activity Coordinator Forum, created by the DSW service 8 care homes have implemented elements of the Namaste Care Programme 3 care homes have implemented Advance Care Plans as a result of the service 7 care homes have implemented the use of Pain Scales as a result of the service 4 care homes awarded Recognition of dementia care improvement by the Mayor of Walsall celebrating their engagement with the service.
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30 International Dementia Conference in Birmingham November Dementia Specialist Interest Group Hospice UK NCPC Conference International Dementia Conference in Sydney Australia Housing LIN case study Big Centre TV The West Midlands Academic Health Science Network Person-centred Care Innovation Highly Commended NHS England case study Recognition
31 Challenges Engaging with care homes. Building and sustaining momentum Joined up working with other professionals Not understanding work already being undertaken across the borough Just another quick fix service! How do you overcome the challenges?
32 Collaboration Strength of the project is the collaboration between organisations sharing of ideas, knowledge and expertise.
33 The future The pilot has currently supported 33 care homes out of 56 providing tailored education programmes and support. The numbers of care homes engaging is increasing on a weekly basis. Integration with other services (nursing home manager s forum, case managers and professionals in the acute trust) has been achieved. Launch of a community dementia steering group to began June 2016.
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35 Helen Reeves Operational Lead for Walsall and Inpatient Services St Giles Hospice Michael Hurt Head of Older People & Dementia Walsall CCG & Walsall Council
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