I was pleased to attend the formal launch of ‘Dementia Carers Count’ this morning and to learn more about the residential courses that this newly re-purposed charity is offering family carers of people living with dementia. Claire Goodchild, CEO of ‘Dementia Carers Count’ spoke at our recent Unforgettable event and she has written a guest blog about the aims and vision for the charity.
It was good, today, to meet some of the Trustees of ‘Dementia Carers Count’ and other members of staff, including Hazel May, Director of Service Development. The presentations and discussion conveyed optimism and positivity about the potential for developing a raft of new services for family carers, including a national ‘Dementia Carers Centre’, which is at the heart of the charity’s vision.
‘Dementia Carers Count’ offers 3-day residential courses for family carers, based in two purposefully selected family hotels in Swindon and Birmingham. The courses are open to all family carers and people can self-refer simply by contacting the charity. The core offer is a support course for all family carers, whatever their circumstance. In addition, there are some specific courses for carers of people with young onset dementia, and for carers whose family member has moved into a care home.
This diversity of courses helps to ensure that people’s particular issues can be addressed. Dementia is a long journey and, as the person with dementia’s needs change over time, so do the family carer’s.
I have spoken to a number of family carers who have attended a residential course provided by ‘Dementia Carers Count’ and the feedback has been universally positive. One carer told me that she had given feedback about how, in her view, the course could be improved, and her comments had been welcomed and taken on board.
The spirit of co-production was evident at the launch event today, and it was lovely to catch up with Jayne Goodrick, Peter Watson and Ming Ho, all of whom, as carers, are contributing to the strategic development of ‘Dementia Carers Count’ through the ‘Carers Advisory Panel’.
It’s important to recognise, though, that residential courses wouldn’t suit all family carers. A range of support services is required to meet multiple and differing needs.
For someone like my mother, caring for my father with an ‘emerging dementia’, attending a residential course would feel exposing and ‘too difficult’. (I asked her, and this is how she replied). A locally provided information session would feel more manageable for her and, perhaps, less ‘difficult’.
My parents are both in their 80s and, even with dementia, my Dad is still very active and motivated to remain that way. He is interested in sport, and gardening and woodwork. Despite physical frailty, my Mum goes to Zumba classes and takes an active interest in my work. We are going together to see ‘Still Alice’ at the theatre in a few weeks’ time. She was eager to come with me when I suggested it.
So, what would work for my parents? How could my Mum get the support and information that she needs, and how can my Dad remain engaged in activities that interest and stimulate him? I do not know the answers to these questions yet, but I am working on finding some solutions.
Alzheimer’s Society runs CrISP (Carers Information and Support Programme) for family carers of people with dementia, providing up-to-date, relevant information and an opportunity for carers to share experiences and find out about local and national services that can offer support.
CrISP courses are delivered as a series of sessions (usually weekly) by trained staff and volunteers. The key benefits include: increased knowledge of dementia, practical information to help carers cope with living with dementia day-to-day, connecting carers with other carers to reduce isolation, empowering carers to access support services and financial benefits and entitlements, encouraging carers to plan for the future.
I think a CrISP course might work for my Mum. I am going to look in to whether a such course, or something similar, is available in the area where my parents live.
Central to the work of Admiral Nurses is provision of support for family carers. Indeed, this is how Admiral Nursing began. The original vision was that a specialist mental health nurse would be ideally placed to work therapeutically with family carers, providing information, skills and practical and emotional support, ‘walking alongside’ the family carer throughout the dementia journey.
Admiral Nurses embrace the needs of the person with dementia alongside the needs of the family carer and offer a family-centred approach. Admiral Nurses work in a variety of health and care settings. If there is an Admiral Nurse in your area, do make contact and seek advice and support.
As well, you can call the Admiral Nurses Dementia Helpline on 0800 888 6678. The helpline is open from 9am to 9pm Monday to Friday, and from 9am to 5pm during the weekend. Or you send an email to email@example.com
There are many excellent local carers organisations that provide advice and support to all carers, including those who care for a relative with dementia. Many of these organisations have projects specifically focusing on dementia.
One of my responsibilities as Caregiver-in-Chief at Unforgettable is to put together a ‘Guide to Dementia Services’. I am working on this and, via the ‘Caregivers’ Club’ I shall be writing a series of articles about services that are available for people living with dementia at all points on the journey.
I shall include, in the guide, information about services for family carers, who, in their own right, are deserving of, and entitled to, help and support, and who have untapped skills and knowledge to share with others.
If you have positive experiences of services provided by Admiral Nurses, Alzheimer’s Society and local carers organisations, please do get in touch to let me know: firstname.lastname@example.org
I am especially keen to hear about carers organisations in localities that are doing good work. We would welcome guest blogs, both from service providers and people who have benefitted from using carers’ services. This will be valuable information for inclusion in the services guide.
And, if you haven’t done so already, please do sign up to our ‘Caregivers’ Club’!