Strengthening the Voice of Carers of People with Dementia – Tide will be filling this Global Vacuum

The total estimated annual worldwide cost of dementia in 2018 is US$1 trillion. This figure will rise to US$ 2 trillion by 2030. The Global action plan on the public health response to dementia 2017-2025 was adopted by World Health Organization (WHO) Member States at the 70th World Health Assembly in May 2017. The global plan aims to improve the lives of people with dementia, their families and the people who care for them, while decreasing the impact of dementia on communities and countries. It provides a comprehensive blueprint for action and sets targets across seven areas.  One of these areas is ‘’Support for Dementia Carers’  – under this area there is a key targets that75% of countries provide support and training programmes for carers and families of people with dementia by 2025[1].

Carers make up 44% of the dementia workforce – this figure is likely to be higher in developing countries where there is little formal support for carers available. Over 70% of carers report that caring is having a negative impact on their physical, psychological, emotional and economic wellbeing. The Women’s Health and Equality Consortium (WHEC) report highlights that women provide the majority care – which is likely vary widely across cultures and communities, with many more women taking on this role from Black and Minority Ethnic (BAME) communities. Despite compelling evidence that dementia have a disproportionate impact on women, yet no national strategies on dementia take gender into account.

Together in Dementia Everyday – tide, launched in 2015 is the only global network for the involvement network for carers of people living with dementia, hosted by the Life Story Network CiC, but will be established as an independent charity in early 2020. Tide has galvanised a grassroots movement of carers of people with dementia to assert their rights, raise awareness and change societal attitudes towards the impact of caring on them as individuals. Underpinning our social movement are the principles of asset based community approaches and principles of self efficacy, tide believes that carers are the powerful agents of change and they have a right for their voices to be heard and acted on.

Baljeet (2017) highlights that despite sector-wide appreciation that lived experience of social issues, the wider health and care sector is slow to recognise the full value and benefit of carers ‘leading’ change[2]’. Tide is now radically changing this across the UK and introducing it on an international stage too. Through our Carers Development Programme , we are enabling carers with knowledge, skills and confidence as well as providing them with opportunities to influence change from policy, research, practice, commissioning and education.

As CEO for LSN and tide, I have been working with Chris Lynch, Deputy Chief Executive of the Alzheimers Disease International to ensure that at an international level there is parity in ensuring that the voice and experience of caring for a person with dementia is heard, respected and acted on.  I am delighted to have three abstracts focused on the experience of carers of people with dementia accepted for the Alzheimers Disease International Conference in Singapore 19th – 21st March 2020.   Accompanying me to deliver these presentations will be former carers Frank Arrojo, Janis Cottee, Ruth Turner and Micheál McLaughlin, Carer Involvement Lead for Dementia United in Greater Manchester. This

[1] Alizheimers Disease International (2019) From Plan to Impact II The urgent need for action

[2] Sandhu Baljeet (2017) The Value of Lived Experience in Social Change: The Need for Leadership and Organisational Development in the Social Sector

© National Dementia Action Alliance 2020. All rights reserved

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