Frances Lawrence, Chief Executive at Dementia Carers Count, a national charity which supports, advocates and campaigns for dementia carers, shares her thoughts on the current challenges and the critical need for support, recognition, and resources.
There are over 5 million unpaid carers in England and Wales. Nearly one in five is caring for someone living with dementia – most often a spouse or partner or a parent. These carers are coping with unimaginable changes to their relationships, whilst juggling a huge range of responsibilities from help with eating, drinking and dressing to managing medication and finances and enabling social interaction. Many dementia carers receive very little, if any, support. Our research shows that nine out of ten are reaching crisis points. All too often, dementia carers feel overwhelmed and alone.
It can take a long time to receive a dementia diagnosis. Often, it comes as a complete shock to many families that after such a life-changing diagnosis, there is little information, advice or guidance available. Families are simply left to get on with things. They are expected to become instant experts and to manage everything by themselves.
Dementia carers tell us of their desperation for information. They want to understand more about the specific diagnosis that has been given and what support they may need to provide. There are over 200 different types of dementia and every carer’s journey is and will be unique. Generic advice is often not helpful, and can instead make carers feel like no-one else understands what they are going through.
As a first step, early identification of family carers is vital. We must work towards better shared record keeping between health and social care professionals to ensure that anyone providing unpaid care is known across services. The identification of someone fulfilling a caring role (whether they call themselves a carer or not) should trigger an initial assessment of their needs. This should lead to provision of personalised support and information and development of contingency plans.
At the moment, only about half of dementia carers are receiving Carers’ Assessments. Even when assessments do take place, they do not always result in a support plan or the right support. Sometimes it can be impossible for a carer to take up a support offer if they have no respite care. Often people’s circumstances can quickly change as dementia progresses, and what was needed one week is totally irrelevant the next.
It would make a big difference if carers could have a single point of contact. This should be given to them at the point of diagnosis, whether someone says they need it or not at that moment. It’s really important that carers know they have someone they can turn to whenever they need practical help or emotional support.
Professional intervention shouldn’t just happen at crisis points, such as a hospital admission.. The onus should be on professionals to regularly check on carers’ well-being and needs. With a third of unpaid dementia carers experiencing poor mental health and a quarter living with poor physical health, the importance of proactive follow up cannot be under-estimated, not least in order to prevent crisis points being reached.
Unpaid carers save the economy £445 million pounds every day. Without them our health and social care services would collapse. With a general election on the horizon, and dementia prevalence on the increase, all Parliamentary candidates should be aware of the support dementia carers need. While carers are recognised in law, the intent of legislation has never been backed up with adequate ring-fenced resources. We urgently need long term and fully funded national carers’ strategies, which provide clarity on the support carers need and can expect. We must achieve cross-party consensus on the future of social care and collectively plan for an appropriately resourced and valued workforce which is dementia aware and carer aware.
Free practical and emotional advice and support is available through our Carer Support Line – open Mon-Fri 9am-5pm 0800 652 1102
