A Road Less Rocky Supporting Carers of People with Dementia

1. A Road Less RockySupporting Carers of People with Dementia Louise Marks, Dementia & Older Carers Policy & Development Officer

2. Carers Trust – Who we are • Carers Trust* is a UK-wide organisation created from the merger of two leading charities with a long-standing history of supporting carers – Crossroads Care, established in 1974, and The Princess Royal Trust for Carers, founded in 1991. • Across the UK, Carers Trust supports the work of local Network Partners (carers’ centres and schemes). independent carers centres, Crossroads Care Schemes and young carers services. • Carers Trust also provides grants to carers, online support for carers and the professionals who work with them, and acts independently in the interests of carers through research, development, consultation, and by influencing policy.

3. Carers of People with Dementia • 670,000 acting as “primary” carers • Many in 50s or 60s and balancing caring with work and supporting family • Many older carers are over age 75 the older the carer the more hours a week they care • Research shows the more demanding the caring role the less likely carers are to look after their own needs or seek help.

4. Carers Trust Road Less Rocky Research • Wanted to find out what the challenges are for this group – commissioned research by University of York we asked: • What are the key stress points in the caring journey when support or advice is needed? • What are the key types of advice and support needed at what times in relation to the carers own life and wellbeing? • What are the key types of advice and support needed at what times in relation to caring for a person with dementia? Needed fuller picture of carer experience from (pre)diagnosis to death.

5. Critical points in the Caring journey • A distinctive aspect of the research was it explored (through interviews, focus groups and a survey ) the information and support needs of carers along their caring journey.

6. 10 Critical points

7. Critical points • When the person is diagnosed with dementia • When the carer takes on an ‘active’ caring role • When the capacity of the person with dementia declines These three critical points will affect most carers, and come during the early stages of the caring journey. At these points carers are likely to come into contact with health and social care staff, opening up the opportunity for support / information and advice

8. Two pivotal points, when carers may consider residential care • When the carer has to cope with changes in behaviour • When the person with dementia becomes incontinent If carers had been offered the right information and support they may have felt able to continue to care at home

9. Other important points in the carers journey • When the carer needs emotional support and/ or a break from caring ‘I really need to be able to talk at length to someone about the problems I face. I feel isolated and so very tired…..’. • When the person with dementia loses their mobility ‘I hurt my back lifting him when I should have said no but he was shouting that I didn’t care and he needed help so I gave in !’

10. Other important points in the carers journey • When the person with dementia has other health conditions. • When the carer’s own circumstances change • When decisions about residential care and end of life care have to be made

11. Conclusion It is at these critical points when carers will encounter professionals and service providers They play an important role in identifying the carer carers can then be and guided towards the relevant information and support What is important to carers at these critical points is that they know who to contact to get support and advice or to be referred to the appropriate place

12. 'Making the Road Less Rocky for Carers' A guide for supporting carers of people with dementia The toolkit gives guidance to professionals, who come into contact with carers of people with dementia. This toolkit is designed around the ten critical points, highlighting the issues carers face at these points and what will make a positive differenceto them. The toolkit has links to useful information and resources

13. Making the Road Less Rocky –Carers Road Map A Guide for carers, supporting someone with dementia This guide is designed around the ten critical points, aims to give carers the information they need, and plan ahead The toolkit has links to useful information and resources

14. 'Making the Road Less Rocky for Carers’A guide for supporting carers of people with dementia • On Line Toolkit Making the Road Less Rocky –Carers Road Map

15. Links • Triangle of Care for dementia • A Road Less Rocky • Making the Road Less Rocky

16. Louise Marks Dementia Policy & development officer lmarks@carers.org 07971448765