A Road Less Rocky: too many missed opportunities for carers of people with dementia
As we publish a new report highlighting the lack of support and information that carers of those with dementia are receiving, our Policy & Development Manager for Mental Health, Ruth Hannan reflects on a host of missed opportunities…
A road less rocky is something we all hope our journey through life will be. But it seems to be the least carers of people with dementia can ask for yet their road seems to be far more challenging than it needs to be.
Carers Trust published research on 17 September that we commissioned the University of York and Firefly to conduct for us. We wanted to know what the experiences of carers of people with dementia have been throughout the caring journey; looking at every point from the very beginning to the very end. We wanted to know at what key points carers would benefit from receiving advice, information and support.
For those of us who are or work with carers of people with dementia, the findings aren’t anything we don’t know already but the consistency and prevalence of the key points is crucial for us to demonstrate to health and social care professionals what they still need to be doing.
The report cites ten key points that if professionals offer, check and provider carers with information and support a significant difference can be made for them and the person they care. These key points are:
- When dementia is diagnosed
- When the carer takes on an ‘active’ caring role.
- When the capacity of the person with dementia declines.
- When the carer needs emotional support and/or a break from caring.
- When the person with dementia loses their mobility.
- When the person with dementia has other health problems.
- When the carer has to cope with behaviour problems.
- When the carer’s own circumstances change.
- When the person with dementia becomes incontinent.
- When decisions about residential care and end of life care have to be made.
Currently professionals are missing these opportunities for interventions. Every missed opportunity has an impact on, not only the carer, but the person with dementia. An opportunity to make a decision earlier, an opportunity to plan while the carer and the person with dementia can do this, an opportunity to support the carer’s health and opportunity to help the carer understand dementia and how it may affect the person they care for.
As the journey progresses professionals should still check that the carer has been given all they need rather than assuming that one of their peers or colleagues has done this. If they don’t, we have another missed opportunity.
I hope with the publication of this report commissioners, providers, and frontline staff will realise the impact their missed opportunities are having on the carers’ lives. Let’s hope with this report thy realise by offering information and support they can remove a rock from the rocky road rather than adding one if they miss the opportunity.