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Target audience: Care Transfer Hubs, community NHS and social care, and Voluntary, Community, Faith and Social Enterprise (VCFSE) partners.
Setting out the challenge
ICSs report challenges with transferring people with advanced dementia and ongoing delirium into long-term care whilst they are recovering in intermediate care, Getting an assessment is reported to be complex, long winded and feel like a battle. This results in individuals not being moved on from intermediate care services, who are already dealing with capacity issues and demand.
The other challenge comes from overuse of pathway 3 for people with dementia and delirium, whose needs could be better managed in pathway 2; and may result in not receiving the benefits of rehabilitation and reablement. If moved to pathway 2, there is a subsequent effect of adding to the demand for intermediate care services, which can result in prolonging the person’s stay in hospital if capacity is not available, and have a knock on impact on the wider system, such as Emergency Department waiting times.
With further progression of dementia, it can become increasingly difficult to predict the journey for an individual, including when they are approaching advanced stages of dementia, including end of life. A review of palliative care in advanced dementia (Front Psychiatry, 2020) showed that people with dementia receive palliative care less often than other conditions (for example, cancer). This is despite the fact that palliative care in advanced dementia has a focus on quality of life, can improve symptom burden, prevent over or under treatment and reduce care partner burden.
Voices from stakeholders
Decisions made about care need to be considered based on the paradigm the person is in, respecting their wishes and preferences about how to be cared for."
Assessments for long term care are complicated and are the documents are challenging to navigate for people with advanced dementia."
H1. Assess people for long-term care at an optimised time
H1.1. Clearly describe the process for individuals on a discharge pathway from hospital to access an appropriate assessment for their long term care needs, either through a Care Act assessment or for a small number of those with the highest levels of complex, intense or unpredictable needs an assessment for NHS Continuing Healthcare (CHC)
- Where there is a genuine need for long-term care, care transfer hubs could work closely with social care and/or where appropriate NHS CHC representatives in multidisciplinary teams to support the facilitation of an assessment at the point of recovery where possible, to ensure an accurate assessment is made.
- Where a transfer of care is required, efforts should be made to minimise the number of moves for the person that may cause them distress, recognising the impact of a familiar environment with familiar faces.
- If intermediate care services need to refer for a long term care assessment of needs (by the appropriate local authority and/or NHS team), there needs to be an agreed process and timeframe in which to do this.
- Efforts should be made to address any underlying reasons for behaviours of distress, in order to get the most accurate picture of the person’s need, i.e. in the right place at the right time.
- Efforts should be made to recognise any queries and concerns of care partners.
H2. Enable personalised support in end of life care
H2.1. Clearly describe the service offering, ensuring there is equitable access for people with dementia and delirium to high quality, compassionate, integrated palliative and end of life care
- Teams in acute hospitals (ward staff, care transfer hub staff, hospital-based multidisciplinary teams) and intermediate care services providers (e.g. intermediate care teams, reablement teams) should be able to refer into/ access the palliative care or end of life pathway to ensure suitable provision of care when the person is transferred out of hospital back into their home.
- Palliative care and end of life service provision should be reviewed in the context of NICE Scenario: Management of end-stage dementia, and be bespoke to the needs of those with dementia (maximising any valuable information from the person’s Comprehensive Geriatric Assessment).
- Staff caring for people with advanced dementia will need the skills and training to: identify signs of rapid deterioration; act in accordance with an individual’s advanced care plan directives; put in place interventions that respect the person’s wishes whilst making sure they are cared for and supported.
- When a person is at the end of life, it is vital that the care partner is also supported, and that there are mechanisms to do so (e.g. emotional, bereavement support).
Supporting resources
- End of Life Care in Frailty: Advance Care Planning (BGS)
- How to know when a person with dementia is nearing the end of their life (Alzheimer’s Society)
- Dementia and end of life planning (NHS)
- Caring for someone with dementia who is near the end of life (Marie Curie)
- Dementia End Of Life Care – Late Stage Dementia (Dementia UK)