High Impact Change Area A: Embedding effective support for unpaid carers

Setting out the challenge

In the UK, it is reported that informal carers provide 1.34 billion hours of unpaid care to people with dementia each year, equating to a cost of £11.6 billion per year (NICE Guideline 97). Caring for a person with dementia can have a big impact on mental and physical health and overall wellbeing of the care partner.

Research indicates that over 80 per cent of people caring for someone with dementia are reaching a crisis point and are in desperate need of recognition and support (Dementia Carers Count 2023). As well as all the changes that typical caring responsibilities can bring (practical, financial, physical etc), care partners of people with dementia may be more affected emotionally as the person they care for changes (particularly in coping with behavioural and psychological symptoms as they present).

Care partners are the experts in the person for whom they care and best outcomes are likely when they work in partnership with the medical or social professionals (John’s Campaign). They can offer support if the person is stressed, anxious, upset or lonely or to help with care needs; decision making and advocacy where appropriate. A more inclusive attitude for care partners is required, where they are listened to, heard and consulted more closely, whilst respecting the rights and choices of the person who needs care.

Voices from stakeholders

Carer crisis is a key reason for triggering admission and therefore vigilance on carer risk is key." 

If I had a little bit of time to myself, even 15 minutes to go outside and take a break, I would be able to regain the momentum to continue. Now I don’t even get that."

The carer is almost more important in terms of managing the dementia progression than the person in the later stages; if they are exhausted you are done for."

Outcomes

A1. Carers experience being treated as full partners in decision making 

The training needs to:

• be part of a wider skills and education focus on dementia and delirium (described under ‘Enablers’) that describes how to work with care partners for decision making
• explain the role of care partners as a voice for the person being cared for in accordance with the Mental Capacity Act, including how best interest decisions are made, where the person lacks capacity
• include information on Independent Mental Capacity Advocates (IMCA) in the ICS, with a clear understanding of how to access it for the teams using it. IMCAs represent people where there is no one independent of services, such as a family member or friend, who is able to represent the person
• emphasise the benefits of effective communication to prevent care partners feeling blind-sided or excluded from the decision-making process
• promote a strengths based approach (rather than problem based), in order to reduce dependency, protect and promote independence, resilience, choices and wellbeing.
• promote the use of ‘carer passports’ as a mechanism to recognise and support care partners in a hospital setting. 

This review and development of such mechanisms could be: 

• performed in conjunction with existing carers groups or organisations within the local area, where valuable expertise can be drawn upon for planning
• part of a wider ethos driven by leadership the ICS to embed co-production and co-creation as a culture in ways of working. This could include care partners as part of a spectrum of people with lived experience who are affected by dementia, at a decision-making level in the local area (e.g. Urgent and Emergency Care Boards)
• supported by the creation of policy and practice protocols for each setting, regarding confidentiality and sharing of information, to enable a mechanisms to share useful intelligence in accordance with the Data Protection Act (2018)
• focused on shared decision making that includes the person be cared for, in line with the Mental Capacity Act. Decisions are therefore formulated by a combination of people who know the patient best
• able to provide reasonable adjustments (for example, telephone call, video call) for care partners who are not available onsite (for example, working, travel restriction).

A2. Prevention of care partner breakdown through access to timely information and support

This information can:

• range from practical, financial, or emotional (including bereavement), and should be able to be tailored based on individual need (i.e. covering the specific diagnosis and likely care needs)
• equip carer partners with knowledge of the dementia and delirium services available within their local footprint for the person they care for, and how to access them. This should ideally be through a single point of contact and local areas will need to reflect on their ability to provide this
• provide links/ information regarding the relevant forms and care plans that will enable them to plan ahead for the future with the person they care for (e.g. ReSPECT forms, advanced care plans, ‘This is me’ documents). This should include a plan for what to do in the event of the care partner breakdown.
• describe the provision of services and how to access local VCFSE organisations, or other available support who may be able to provide help with tasks such as progressing funding paperwork, coordinating use of equipment and adaptations to the home 
• describe any other care partner support services available locally e.g. access to specialist advice, carers’ groups, memory groups, day centres, advice about care homes, support with end-of-life care (and the benefits of advanced care planning)
• provide helpful materials/ documents that will best support the care partner to fulfil their role. For example top tips for care partners, which tells them what to say over the phone, or education to improve capabilities post discharge (e.g. what is delirium and how to prevent it) 
• recognise that the experience of living with or caring for someone with dementia is influenced by culture. Local areas should work with VCFSE groups, and care partners within their communities to develop a plan that aims to overcome barriers linked to language and education and adapt support based on religious beliefs and cultural traditions, to maximise uptake based on their local population. 

A2. Prevention of care partner breakdown through access to timely information and support 

Therefore any review of respite opportunities should enable reflection on the provision of support to keep a person at home when: 

• Care partners experience crisis, to prevent the person being cared for entering the hospital environment when we know this has a negative impact on them and will likely result in an admission. This could be a temporary step-up into e.g. a care home (with a dementia attuned team and environment), or provision of care at home. 
• Formal care packages are being formulated and access to 24/7 overnight cover will enable the person to be cared for at home, instead of in a hospital or bed-based setting. This may be a temporary arrangement, but provides peace of mind to the care partner, where they cannot manage alone. 
• The care partner needs an opportunity to rest and re-charge, ranging from someone being in the home whilst the care partner takes a short walk, to day care provision with transport services. This is also an opportunity to review whether day services are available, affordable and how personal health budgets can be maximised to provide respite opportunities.
• The care partner would benefit from an opportunity to be seen and heard, in what can be described as a very isolating role (e.g. carers support groups). The review could consider how a community development approach can be taken, i.e. how communities could provide support to the care partner themselves (e.g. intergenerational participation programmes). 

Supporting resources

• John’s Campaign (for information on how to embrace care partners) 
• Dementia Care and Support (NHS)
• Carers: looking after yourself (Alzheimer’s Society)
• Looking after yourself as a carer (Dementia UK) 
• What is an Admiral Nurse and how can they help (Dementia UK) 
• Carers checklist for Virtual Wards (Carers UK) 
• Virtual wards advocacy guide (Carers UK) 
• Someone to speak up for you (advocate)
• Hospital Carer Passport Schemes 
• Carer’s Hospital Passport (Torbay and South Devon NHS Foundation Trust)