NFWI Resolutions Shortlist 2016 – Resolution Number 8: Appropriate care in hospitals for people with dementia

In the final NFWI resolution to be presented to Sotonettes members for ballot, provision of carers for hospital patients with dementia is debated.

 

Sotonettes members are entitled to vote on this issue; for more information, click here, or download a handy booklet here. Or visit our Facebook page!

“We call upon HM government and the NHS to provide facilities to enable carers to stay with people with Alzheimer’s disease and dementia that have been admitted into hospital.”

Proposer’s position

The proposer’s intention is to improve the hospital care of those suffering from Alzheimer’s disease or other forms of dementia (but who may have been admitted to hospital for an unrelated condition) by calling for hospitals to provide facilities to enable their carer to stay with them for the duration of their hospitalisation.  This, the proposer argues, will improve the health and wellbeing of patients both with and without dementia, reduce long-term financial burdens on the NHS, and ensure that institutional dementia care is person-centred.

Outline of the issue

Dementia is a syndrome that can be caused by variety of progressive mental disorders. This syndrome can impair cognitive processes such as memory, spatial orientation, and language skills, compromise someone’s ability to perform every day activities, and alter their behaviour and mood. Alzheimer’s disease is the most common type of dementia, but is by no means the only one and symptoms of dementia are varied, complex, and sometimes difficult to diagnose. There are 850,000 people in the UK living with dementia and that number is expected to rise to over a million in just five years.[1]

Dementia is a local, national, and global health crisis, affecting more people than cancer, heart disease, or stroke. It is the leading cause of death among women and one in three people who die after the age of 65 have it.[2] In the UK twenty-one million people have a close friend or relative who has the syndrome and 550,000 people in the UK care for someone with it. Women are two and a half times more likely than men to become carers for someone with dementia.[3] Globally there is a new case of dementia every four seconds and by 2020 there will be seventy million people worldwide living with the condition.

Dementia costs in the UK total £19 billion per annum and, according to the King’s Fund, total dementia spending will reach £35 billion by 2026.[4] Its emotional and intangible cost to carers and loved ones is immeasurably devastating. It is not an overstatement to say that dementia is the health crisis of our time.

Dementia Care in Hospitals

 The pervasive and widespread reach of dementia means that dementia care will invariably be impacted by the wider health policy context and vice versa. Due to the National Dementia Vision for Wales (2011)[5], the National Dementia Strategy (2009)[6], the Prime Minister’s Dementia Challenge (2012)[7], and the Prime Minister’s Challenge on Dementia 2020 (2015)[8] there is a greater awareness amongst health professionals, carers, and the wider public about the needs of people with dementia and an explicit recognition that dementia care must be a health and social care priority. Significant progress has been made over the past five years: fifty-nine per cent of dementia sufferers now receive a diagnosis and appropriate post-diagnosis support, over 500,000 care and hospital workers have received Tier 1 dementia training, and £50 million has been invested in dementia friendly environments in hospitals and care homes.

However, despite this investment and stated commitment to dementia friendly hospitals, hospital care for people with dementia remains a key area of concern, whether these patients are admitted because of their dementia or for another, ostensibly unrelated condition (although often those other conditions are germane to the dementia). Seventy-two per cent of people living with dementia also suffer from other conditions or disabilities, which means they are routinely admitted to general hospital wards in high numbers. Today over one-quarter of all hospital beds in the UK are occupied by a patient who has dementia.

The evidence base concerning the detrimental effects of a hospital stay for people with dementia is stark and concerning:

  • One third of people with dementia who are admitted to hospital for an unrelated condition never return to their own homes
  • Forty-seven per cent of people with dementia who go into hospital are physically less well when they leave than when they went in and fifty-four per cent are less well mentally[9]
  • People admitted to hospital for dementia stay in hospital longer, face the possibility of readmission more frequently, and are more likely to die in hospital than patients without dementia[10]
  • Fifty-four per cent of carers report that a stay in hospital has made the symptoms of dementia worse, resulting in the dementia sufferer becoming more confused and less independent

The evidence proves that a hospital stay for someone with dementia can often be catastrophic, despite the cure or resolution of their acute condition that prompted admission in the first place.

Since dementia sufferers are often admitted for an acute physical condition such as pneumonia or a fractured bone, dementia patients can typically be found in general medical and surgical wards where their carer is often not able to stay with them outside of traditional visiting hours. Since people with dementia can be distressed by being in unfamiliar surroundings, a stay in a busy, noisy, and confusing hospital ward without their carer present can be deeply unsettling for them and further cause their mental state to deteriorate. The patient loses the ability to have much-needed social interaction and family members often feel helpless because they are prevented from providing care for their loved ones. To compound this, nurses and doctors may be unaware that the patient even has dementia, so the patient’s additional dementia related needs are neglected.

Involving a family member or other trusted carer from admission into hospital until discharge has been proven to ensure a better quality of care and leads to improved outcomes for the patient. Yet, currently there is no obligation for hospitals to ensure that their patients with dementia have access to their carer whenever they need them. Carers are typically treated like visitors, constrained to normal visiting hours only. It remains up to each individual hospital to set their visiting hours policy.

The campaigning group John’s Campaign was launched last year by campaigner Nicci Gerrard after her father’s hospital experience completely accelerated his dementia. Even though the nurses and doctors provided excellent care for his acute condition, Nicci believes that the lack of care continuity and the inability of John’s caring family members to stay with him during his hospitalisation had a detrimental impact on his overall health. The campaign is calling for families and carers of people with dementia to have the same rights as parents of sick children, and be allowed to remain with their loved one in hospital for as long as they deem necessary. The campaign is calling for this to be a right, not a duty. Since the launch of the campaign, the Care and Support Minister wrote to the Chief Executives of all trusts asking them to allow carers to stay on the ward like parents and over one hundred hospitals and wards have publicly committed to making changes in order to allow carers to stay with their dementia patients. However, it still remains up to the individual hospital to decide its own policy to create a dementia friendly hospital.

Arguments for the resolution

  • It is clear from the evidence that not all hospitals have taken steps to be dementia friendly and vulnerable patients with dementia are suffering as a consequence. Now may be the time for the WI to urge more action to achieve the important goals set out in the Prime Minister’s Dementia Challenge to create dementia friendly spaces.
  • As this campaign does not call for a national right, but rather for facilities to enable carers to stay with patients, there is scope not only for the NFWI to lobby on the issue nationally, but for individual WIs to work with their local wards up and down the country to help hospitals voluntarily achieve the aims of the resolution. This approach can foster innovation in how hospitals create dementia friendly wards.
  • Just as the WI led the campaign for parents to be able to stay with their sick children in hospital with a 1950 resolution on that topic, the WI can again take the lead on transforming hospital care practices for the better.

Arguments against the resolution

  • John’s Campaign is already the established voice on this issue and due to this campaign hospitals are starting to adapt their practices for carers of people with dementia; is there really more for the WI to add?
  • Hospitals face a very challenging care climate at the moment, with the financial environment forcing hospitals to make difficult efficiencies. This resolution may be an unreasonable and unfeasible ‘ask’ at this time.
  • An unintended consequence of this resolution is that hospitals displace the burden of adequately caring for their dementia patients onto family members and carers. Not everyone has a carer, but every dementia patient deserves to be treated in a dementia friendly environment. Might this resolution lead to inequities in care further down the line?

Groups to contact for further information

John’s Campaign- for the right to stay with people with dementia in hospital

Nicci Gerrard and Sean French

57 Hemingford Road, London N11BY

Nicci.gerrard@icloud.com

www.johnscampaign.org.uk/partnerships.html

 

The Alzheimer’s Society

Devon House, 58 St Katharine’s Way, London, E1W 1LB

Tel: 020 7423 3500

enquiries@alzheimers.org.uk

www.alzheimers.org.uk

Twitter logo v small@alzheimerssoc

 

Alzheimer’s Research UK

3 Riverside. Granta Park, Cambridge CB21 6AD

Tel: 0300 111 5333

enquiries@alzheimersresearchuk.org

www.alzheimersresearchuk.org

Twitter logo v small@ARUKnews

 

Carers UK

20 Great Dover Street, London SE1 4LX

Tel: 020 7378 4999

advice@carersuk.org

www.carersuk.org

Twitter logo v small@CarersUK

 

References:

[1] Living and Dying with Dementia in Wales: www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/february-2015/living-and-dying-with-dementia-in-wales.pdf

[2] Prime Minister’s Challenge on Dementia 2020: www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020/prime-ministers-challenge-on-dementia-2020

[3] Alzheimer’s Research UK: www.alzheimersresearchuk.org/about-dementia/facts-stats/10-things-you-need-to-know-about-the-impact-of-dementia/

[4] The King’s Fund: www.kingsfund.org.uk/sites/files/kf/field/field_publication_summary/future-trends-overview.pdf

[5] National Dementia Vision for Wales: gov.wales/docs/dhss/publications/110302dementiaen.pdf

[6]National Dementia Strategy: www.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf

[7] Prime Minister’s Dementia Challenge 2012: www.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf

[8] Prime Minister’s Challenge on Dementia 2020: www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020/prime-ministers-challenge-on-dementia-2020#fnref:20

[9] Alzheimer’s Society, ‘Counting the Cost’: www.alzheimers.org.uk/site/scripts/download_info.php?fileID=787

[10] Prime Minister’s Challenge on Dementia 2020: www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020/prime-ministers-challenge-on-dementia-2020#fnref:20

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