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Making Shared Care a Reality by Together in Dementia Everyday (tide)
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Tide explores experiences of shared care for unpaid carers who support a person with dementia
Together Against Dementia Everyday (tide) is a charity which works side by side with carers of people with dementia to ensure that their voices are heard.
Their 2025 report, Making Shared Care a Reality, explores the experiences of unpaid carers (usually family members or friends) when the person they care for moves into a care home.
What is Shared Care?
Shared care refers to continued carer involvement after a person they have cared for enters a care home.
Tide’s ‘Making Shared Care a Reality’ report came about when discussions around shared care were taking place at Tide coffee mornings and the Tide Advisory Group (TAG).
These conversations shone a light on the variation in carers’ experiences of shared care. Some carers reported that care homes were proactive in engaging with and supporting them to feel part of a team whilst others were left feeling uncertain about the role they played in formal care. Some carers faced active exclusion by care providers when ‘settling in’ periods were imposed by the care home leading to a sense of disconnect and frustration.
Joining PEN
The variation in carers’ experiences mirrored the Care Quality Commission (CQC)’s findings in their review of dementia care services which reported an “unacceptable gap in the quality of care that means people are at risk of experiencing poor care”.
When tide joined PEN earlier this year, the opportunity arose to gather views from their membership more widely which could be shared with the CQC and which formed the basis of their report.
Report findings
The report raises awareness of the disparity in shared care practices and explores the potential of shared care to improve outcomes for people with dementia and their carers.
It highlights the profound change in the role of unpaid carers when the person they support moves into a care home. Many of the report’s respondents were unaware of the principle of shared care and had assumed their role in care would be significantly diminished when the person they care for moved into formal care. This led to many carers experiencing feelings of loss, guilt and exclusion. Some questioned whether they were still a carer.
‘I feel like I went from being able to care for my mum to being a visitor overnight. It was a change that neither of us wanted or were ready for.’ Steve, carer
Tide advocates for carers to be recognised as essential partners in person-centred care. They argue that the carers’ insights and experiences can help create a more compassionate and effective dementia care system with people at its heart.
They report that shared care helps maintain continuity of care, reduces distress for the person with dementia and the carer, and integrates the carer’s expertise and emotional bond into formal care.
The report cites tools and practices such as Life Story Work, where care homes are given the life story of the person moving into formal care. Life Story Books may be used to help build relationships with staff and other care home residents and to inform care plans. However, some respondents reported dissatisfaction where information was not utilised fully within care planning.
Tide reported that many carers felt able to report concerns to the Care Quality Commission (CQC) and identified the barriers faced by those who did not.
Recommendations
As a result of their report findings, tide highlights the importance of acknowledging the emotional and physical impact of caring for a person with dementia. They recommend increased emotional support for carers.
They recommend that care homes adopt shared care policies and staff training in using shared care tools and practices.
They add that carers’ involvement should be flexible to take the needs and preferences of carers into account. The carers’ health, wellbeing and personal commitments will likely impact their level of involvement in care, yet many respondents reported a lack of negotiation with care home managers and staff. Tide also points to a need for communication to be open and inclusive to foster transparency and shared decision-making.
Next steps
The report was launched with a webinar and panel discussion. They are now working on:
- Training and Support Session Developed with Seven Care Home Pilot Sites– developing practical training and resources for carers and care home staff. The aim is to give people the tools and confidence they need to bring shared care to life in their own settings. The resources will be launched on the 9th December during this webinar https://www.eventbrite.co.uk/e/1794593891639?aff=oddtdtcreator
- Partnership Working – building strong links with inspection and regulatory agencies so that the training and resources tide create can be recognised, supported and shared more widely.
- Working closely with tide’s Shared Care Advisory Group - making sure carers are right at the heart of everything that tide do. Their voices and experiences continue to guide and shape this work as it grows.
To find out more, please visit tide’s website.
You may read the full report here.
Please contact tide with any queries about their work.
