Carers Call to Action

Who is involved? NHS Institute for Innovation and Improvement Department of Health Carers Trust Uniting Carers, Dementia UK Local Government Association Carers Nutricia Social Care Institute for Excellence Alzheimer's Society Dementia Web/Guideposts Trust Royal College of Nursing

The Journey – When it Began The idea for a Carers Call to Action was first presented at the quarterly DAA meeting in May 2012 Initial group met in September to scope the campaign followed by wider discussion with DAA A working group was formed in November 2012 The core leadership group have met twice and held conference calls to develop the proposal

What we have Achieved! We have formed a committed core group Developed a narrative and goals Received funding from Nutricia

Carers Call to Action Narrative Carers of people with dementia must be recognised as essential partners in care. Many carers of people with dementia are coping in silence. We must do more for them.

Call to Action There are approximately 670,000 people living with dementia in England and one in three people over 65 will have a dementia by the time they die. This number is set to double in the next 30 years. 550,000 people act as primary carers for people with dementia and save the nation £7 billion every year. (PM's Challenge on Dementia, March 2012). Research shows that carers of people with dementia experience greater strain and distress than carers of other older people (Moise, Schwarzinger and Um 2004).

Call to Action There are approximately 670,000 people living with dementia in England and one in three people over 65 will have a dementia by the time they die. This number is set to double in the next 30 years. 550,000 people act as primary carers for people with dementia and save the nation £7 billion every year. (PM's Challenge on Dementia, March 2012). Research shows that carers of people with dementia experience greater strain and distress than carers of other older people (Moise, Schwarzinger and Um 2004).

Call to Action Finding out that a partner, parent, or friend has dementia can be a life changing experience. The instant reaction is to try to do your best for the person. Many do so with dedication and care but all too often carers don’t get the information & support they need to allow them to continue making their invaluable contribution. Without support they can unwittingly give the wrong kind of care.

Call to Action A carer of a person with dementia has a unique caring role. The person they care for will often quite quickly, and eventually, lack the ability to convey their wants & needs. It becomes the carer's responsibility to represent and advocate for them to ensure they are treated with dignity & respect. At the same time the carer is trying to maintain their own identity but far too often can suffer depression, emotional and physical exhaustion as a result.

Call to Action Because of the special nature of dementia and the impact of cognitive deterioration and personality changes, carers experience a succession of losses and bereavements over many years of caring. Caring can take place over years, requiring an intensity of vigilance, physical care and emotional support 24/7 from the carer, often with scarce outside help.

Call to Action Many carers have to leave work or reduce their hours meaning lost income for them, reduced pensions and lost income from tax to the government. Carers, and importantly the support of carers, must become an integral part of the care and support package. When carers are well- supported, they can provide better care for the person they care for and report better well- being outcomes themselves (Ablitt, Jones and Muers, 2009).

Goal #1 Carers of people with dementia are recognised as essential partners in care

Goal #2 Carers of people with dementia have access to expertise in dementia care for personalised information, advice, support and co- ordination of care.

Out-of- Hours Doctors/ Paramedics GP District Nurses Social Worker Malcolm & Barbara Consultant Continence Adviser Speech & Language Adviser Dietician Community Dentist Occupational Therapist Equipment Service Physiotherapist Alternating Mattress technician Wheelchair Service Oxygen service Direct Payments Team; Rowan Org. Alzheimer’s Soc outreach worker Care team 2 live-in carers (alternating weekly) Replacement carer [Some night nursing – Health] Emergency carers & Barbara The Web of Care (Last 7 yrs) Dementia Advisory Nurse?

Goal #3 Carers of people with dementia have confidence that their own needs and requirements are recognised and supported, so that no carer feels alone, and are given regular breaks in order to avoid carer breakdown.

Goal # 4 Carer's assessments should identify the ongoing and changing support needs of the carer to maintain their health & wellbeing, make arrangements to meet these needs, thereby valuing the support carers provide to enable the person with dementia to live well.

Goal #5 Carers of people with dementia are able to access good quality care and support services that are flexible, appropriate, timely and provided by skilled staff for both the carer and the person they care for.

Next Steps for Action Endorsement from the membership of the DAA to continue Ensure the core group is representative of a wide section of DAA membership Seek to formalise and clarify the governance structure Review the proposal and create a clear working agreement Funding and resources to take to the next stage and become action