Supporting employees who are caring for someone with dementia

Demographic change is demanding new responses from our society, workplaces, public services and family life as our population and workforce age. As the number of working age people caring for older loved ones with health conditions such as dementia rises, the impact on people’s ability to work is becoming an increasingly critical issue for employers. Half the UK’s 6.5 million carers are juggling paid work alongside caring. Within the total population of carers, the number of people caring for loved ones with dementia is rising and is set to reach 850,000 by the end of the decade.1 Research has shown full-time working carers are most likely to care for a loved one with dementia.2 The employers and carers we work with are telling us the same story as the statistics – that dementia and the impact on employees of caring is a key issue for workforce retention, recruitment and resilience. Very often the need to care for an elderly parent comes at peak career age. Without the right support, the challenges of combining such caring with work (often also with other family responsibilities) can quickly become too difficult to manage. Employees with valuable experience and skills will then either leave their jobs or struggle to cope in the workplace. From earlier research we already know that 1 in 6 carers leave work or reduce their hours to care.3 The experiences from carers and employers captured in this research show that the current support needs of people caring for loved ones with dementia are not being met, especially by care and support services. Problems of lack of knowledge about how and where to get help, lack of timely and relevant information and support and lack of appropriate, quality and affordable care services are raised consistently in the surveys. This lack of support is compounded by a perceived stigma around dementia, often reported by carers, which explains why it remains such a hidden issue in so many workplaces. The often challenging stages of dementia as it progresses also cause particular stresses and strains for carers and their families when unsupported with information and practical help. These gaps in care and support for people with dementia are taking a toll on families’ health, finances and careers. This must now be addressed urgently in policy and practice covering dementia services, wider care services and support for carers of loved ones with dementia, including the impact of such caring, if unsupported, on people’s ability to work. Quality and affordability of care for older and disabled people, including those with dementia, is as much an issue of economic participation as childcare. From carers’ and employers’ experiences in this research, we also see what the right support for people with dementia and their families should look like – good quality, affordable and appropriate care services, health and social care professionals with the right skills and training, supportive workplaces and communities, and family carers who are supported to care. Carers UK is committed to working with others to help make this happen.