What we think about hospital discharge and dementia
We need hospital discharge to work better for people with dementia and their families. We explain what changes we want to see, what the challenges are, and what Alzheimer's Society is doing to help.
What we think
- People with dementia can experience discharges that are inappropriate, unsafe and untimely. This can lead to significant challenges, both for people and their families, as well as the wider health and social care system. These challenges can include physical and mental deconditioning, hospital readmission and premature admission to care homes.
- We need national and local discharge processes and models to work for people with dementia. This means people not staying in hospital for longer than necessary, and being discharged with the right information and advice after a holistic assessment. They should also be discharged to a place of their choosing and with the appropriate onward care and support in place.
- We want to see data collection reinstated, greater involvement of the voluntary sector to support discharge, and guidance on leaving hospital that enshrines patient choice and recognises the specific needs of people with dementia and their carers.
It is estimated that around one-quarter of hospital beds are occupied by people living with dementia who are over 65. But people with dementia experience worse outcomes when admitted to hospital than those without the condition.
In 2018/19, 16% of people with dementia admitted to hospital had a change of residence after discharge. Of those who changed residence, 77% went from their own home or carer’s home to a nursing or residential facility.
More recent data shows that whilst just 5% of hospital admissions for people with dementia in 2021 were from a care home setting, 11% of total discharges were to a care home setting.
People with dementia want to live in the places they call home, but many are unable to return home after discharge.
It is critical that people with dementia in hospital who no longer require hospital treatment are discharged in a safe and timely way.
Discharges should be coordinated properly, involving the person and their family in the process as much as possible.
Sufficient involvement of the carer and family, including notice of discharge, is crucial to a successful discharge. However, this was shown in just three-quarters (75%) of hospital case notes.
Of those who received notice of discharge, a quarter (28%) received less than 24 hours’ notice Moreover, it is vitally important that carers are offered an assessment of their current needs where applicable, yet just two-thirds (69%) had this.
Being discharged to a new place of residency is a decision that should be made with the patient or in their best interests if they lack capacity and be recorded in case notes. However, just two-thirds (66%) of hospital case notes had a record of the patient’s consent or a best interest decision when a change was made to the patients’ post-discharge residency.
Discharge processes are also not always implemented in a dementia-specific way. Just 11% of patients with dementia received an assessment of cognitive functioning at the point of discharge despite this being essential to patients who have dementia to understand if they have responded to treatments. Of those who had a delirium diagnosis, just 18% had a record of cognitive testing upon discharge.
It is also important that all services involved in discharge can access information to ensure appropriate transfer of care arrangements.
Yet across all domiciliary, residential, and nursing care services, 23% stated the discharge information they received was never or rarely sufficient to decide whether they could support placement, and 16% said discharge information was never or rarely accurate. 54% of domiciliary care services said they rarely or never receive discharge summaries within 24 hours, compared to just 7% of nursing services.
Patients with dementia may have experienced deterioration of their condition when in hospital, especially those who stay for longer periods. In 2021, 13% of patients with dementia stayed in hospital between 15 and 30 days and 4% stayed between 31 and 90 days.
Despite this a third of frail people (33%) have reported that the care and support they expected was not available when they needed it after leaving hospital, significantly higher than among patients who aren’t frail (20%). This may largely be the result of people leaving hospital underprepared for their recovery at home, heavily relying on informal care networks.
People living with dementia are at risk of readmission if they have experienced an unsafe discharge without the appropriate care and support in place after they have left hospital.
Discharge records often do not provide information about onward care with only 30% of summaries stating changes in a person’s care needs, 29% stating changes in mobility issues, 18% stating changes in medications and prescriptions, and, worryingly, 34% do not mention agreed future wishes such as Do Not Resuscitate orders.
NHS England have recently introduced transfer of care hubs, based across acute hospital footprints. Each hub should include health, social care, housing, and voluntary sector support and have been set up to coordinate care for people who require formal care and support after discharge as well as any support for unpaid carers.
The hubs should also provide information and support to onward and future care needs. This is to help ensure that long-term care need arrangements, such as NHS Continuing Healthcare, are not assessed on the hospital ward, both to reduce discharge delays and to ensure future care needs take account of their usual home environment.
The Welsh Government has introduced a new Optimal Hospital Patient Flow Framework to improve patient flow and hospital capacity by reducing lengthy stays in hospital.
In Northern Ireland, The Collaborative Forum on Social Care, led by the Department of Health, is currently looking at maximising capacity in the system to deal with upcoming winter pressures in 2023/2024. Whilst details are yet unconfirmed, we will look to engage constructively with the Forum to ensure the needs of people living with dementia are prioritised.
It’s also important housing needs are appropriately addressed in discharge planning to ensure that people are not discharged back to an environment that makes them unwell or risks injury, which puts them in danger of readmission.
Delayed Transfers of Care dataset shows that between March 2019 and February 2020, 48,449 delayed discharges were the result of awaiting community equipment and adaptations. Coordination of care between different healthcare settings is also vital to facilitate a safe and timely discharge.
A multi-disciplinary team approach to discharge planning is needed to improve the discharge process as part of a person-centered approach.
One of the greatest challenges facing the NHS currently is delayed discharges of people who are medically fit to leave hospital. The latest delayed transfers of care data collection found that between March 2019 and February 2020 showed 103 NHS bed days were lost per month due to people stuck in hospital awaiting residential care home placement.
The cost to the NHS is immense, with £587m lost to the NHS due to delayed discharges between June 2017 and December 2019, equivalent to £640,000 every day or £27,000 every hour.
For older and frailer patients, delayed transfers of care can lead to poorer health outcomes. An unnecessarily extended time spent in hospital can contribute to a decline in functioning and mobility, with older people experiencing a 5-10% loss of muscle functioning within the first seven days of a hospital admission.
Delayed transfers of care can also have serious repercussions for NHS bed capacity; hospitals have a limited number of beds and delayed discharges disrupt the whole hospital pathway for other patients who are, or will be, newly admitted.
According to Welsh Government figures, delayed discharge figures as of 17 February 2022 showed that 1,081 people who could have been discharged, remained in hospital.
In March 2020, NHS England implemented the Discharge to Assess model to free up bed capacity due to Covid-19 23. At the start of the pandemic, people were discharged quickly and were not allowed to wait until vacancies in the first-choice care home arose.
People have told us that they were discharged to care settings or their homes without sufficient support. Others were discharged into care homes rapidly who would rather have gone home with support or into a home closer to loved ones. We do not know the impact this had on this cohort of patients.
In March 2022, central funding for the scheme was stopped and Integrated Care Systems (ICSs) were told to continue the scheme through their own baseline funding, working with partners to pool funding if needed.
In January 2023, NHS England announced a £200m Hospital Discharge Fund, in place until 31 March 2023.
The fund aimed to increase capacity in post-discharge care and support, paying for up to 4 weeks of new or extended packages of care. This is for any patient that does not meet criteria to remain in an acute hospital bed, but has additional or new care needs, and is unable to access care at home services. This includes self-funders.
If a person’s preferred care package or placement is not available once ready for discharge, an available alternative appropriate for their short-term recovery needs should be offered, whilst they await availability of their preferred choice. It is vital that people living with dementia are involved and consulted throughout this process alongside their families/carers, where appropriate, to ensure discharge into a safe and appropriate setting.
The Welsh Government introduced the Discharge to Recover then Assess (D2RA) model in 2018 which focuses on a ’Home First’ principle as part of a person-centered approach. The DR2A model accelerated to address the challenges caused by COVID-19, with the Welsh Government announcing the Health & Social Care Regional Integration Fund (RIF), providing an annual investment of £144m to support integrated hospital discharge services on a five-year basis from 2022.
In April 2022, the Welsh Government launched The Six Goals for Urgent and Emergency Care Programme to provide effective, high quality and sustainable healthcare as close to home as possible and improve service access and integration.
The Programme includes a specific objective to ‘provide optimal hospital-based care for people who need short term, or ongoing, assessment, with a relentless focus on good discharge practice’ to reduce the volume of patients who experience a length of stay more than seven or 21 days in hospital supported by a new Optimal Hospital Patient Flow Framework, supported by additional funding for Local Health Boards.
The Welsh Government have also introduced step-down beds or community equivalent packages of care through joint working between Local Government and NHS partners to enhance hospital capacity and facilitate care closer to home.
We want to see local systems ensuring patient choice to be exercised as far as practically possible, within their local discharge criteria.
Reasons for delayed discharges
The Nuffield Trust reported that 22% of patients experienced a delayed discharge because of a lack of rehabilitation support.
This is likely to be particularly important for people living with dementia, as they often experience an impact on their ability to do day-to-day basic activities after a hospital admission.
For social care, the Nuffield Trust reports that 24% and 15% of all patients experienced a delayed transfer of care for domiciliary care and residential care, respectively.
A lack of capacity is largely being driven by a lack of appropriate workforce in the community. The Care Quality Commission reports that, in four of the five Urgent & Emergency Care systems they reviewed, people who were medically fit for discharge could not leave because of insufficient social care capacity.
A lack of workforce capacity and the right staff skill mix also means a reduction in the necessary assessments and arrangements for timely care placement. Skills for Care report that the number of vacant posts in adult social care has increased by 53% in just one year, with average vacancy rates in the sector at 10.7% (1 in 10 posts). This is the highest rate since records began.
The key factors leading to delayed discharge in Wales reflect those in England and Northern Ireland, with a lack of community care packages available, ineffective communication between hospital and in-patients' carers and the lack of data and information sharing between healthcare professionals in different settings, which can delay discharge into social care settings and create a barrier to the provision of person-centered care.
A further issue includes regional disparity in the provision of care and inappropriate discharge times for people living with dementia, particularly in rural areas where transport links are more limited.
For home care, research shows there is a mismatch between available support and the needs of people leaving hospital – for instance, services do not have the available staff to support those people leaving hospital who require two care workers to visit at the same time
What change do we want to see?
- NHS winter planning work should recognise the specific needs of people with dementia and ensure that people with dementia and their carers have access to bespoke support services in a format that addresses their cultural needs.
- We need to see better data published on discharge across all 3 nations. NHS England should reinstate the collection of the Delayed Transfers of Care dataset and break data down by condition.
- Local systems should consider the use of Dementia Advisers as part of discharge planning, such as within Transfer of Care Hub teams.
- NHS should undertake an assessment of the impact on people with dementia who were discharged to a care home following admission.
- NHS should ensure guidance on local delivery of Discharge to Assess /Discharge to Recover then Assess models enshrines patient choice.
- The government should invest in the social care workforce to help retain and attract staff.
- Ward staff to ensure that a multi-disciplinary team approach is taken to discharge planning.
- The government should invest in the social care workforce to help retain and attract staff, and to address the issue of people being stuck in hospital because of a lack of capacity in social care due to staffing shortages. This investment should include increasing pay and improving training, qualifications, and career progression.
What Alzheimer’s Society is doing
- Using our ongoing engagement work with the NHS, the Department of Health and Social Care and the Department for Health and Social Services to ensure there are clear, pragmatic plans to reduce hospital delays for people living with dementia.
- Continue to develop and pilot new schemes designed to improve discharge processes and increase hospital capacity.
- Working with local systems to ensure all staff involved in arranging discharges are trained to at least Tier 2 of the NHS-backed Dementia Training Standards Framework (known in Wales as the Goodwork Framework). Campaigning on the need for broader adult social care reform to support the creation of diverse, quality and well-resourced routes for hospital discharge.
- Influencing guidance to local housing teams, which includes partnership working with hospital discharge teams.
Prepared by Alzheimer’s Society’s Policy team. For more information contact [email protected]
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