A Road Less Rocky Supporting Carers of People with Dementia Louise Marks, Dementia & Older Carers Policy & Development Officer © Carers Trust
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Carers of People with Dementia
670,000 acting as “primary” carers people with dementia Many in 50s or 60s and balancing caring with work and supporting a family Many older carers are over 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
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Carers Trust Road Less Rocky Research Focus on early diagnosis important but conscious of 1000’s of carers who are a lot further down the road. 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. © Carers Trust
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10 Critical points
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Critical Points 1 When dementia is diagnosed 2 When the carer takes on an ‘active’ caring role 3 When the capacity of the person with dementia declines 4 When the carer needs emotional support / break from caring 5 When the person with dementia loses their mobility
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Critical points 6 When the person with dementia has other health problems 7 When the carer has to manage changing behaviour 8 When the carer’s own circumstances change 9 When the person with dementia becomes incontinent 10 When decisions about residential care and end of life care have to be made
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What carers will help support carers at each critical point fits with the wellbeing and prevention principles of the Care Act Early Identification and recognition Early referral to local carers and dementia services To be included as a partner in care To be consulted and respected as experts by experience For their own needs to be considered
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What carers said they need at each of the critical points fits with the wellbeing and prevention principles of the Care Act On going Information, advice, support and advocacy Help to plan ahead LPA, care options, costs, end of life Emotional support through variety means peer, counselling, groups Training on how to support the person with dementia & look after themselves behaviours moving & positioning, health Appropriately trained care workers A break from caring with & without the person they care for Easy access to assessment and recognition of their role © Carers Trust
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Care Act 2014 The same recognition, respect and parity of esteem with those they support. The local authority is required to: Prevent Reduce Delay Maintain an information and advice service for carers.
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Policy NHS 5 year forward plan ‘Upgrade in prevention’ New partnerships between NHS, community, voluntary sector, new support for the 1.4 million carers. Better Care Fund Requirement that plans outlined the support that would be made available to carers, reflecting the inclusion in the fund of £130m for carers breaks in 2015/16. Prime Minister’s challenge on dementia 2020 "England to be the best country in the world for dementia care and support and for people with dementia, their carers and families…” © Carers Trust
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The Triangle of Care best practice guide The Triangle of Care approach was developed by carers and staff to improve carer involvement & support in mental health services. The guide recommends better partnership working between service users, carers, and professionals Carers Trust adapted guide for Carers of people with dementia when that person is admitted to an acute hospital.
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It shouldn’t be left to chance At each of these points carers are likely to come into contact with health and social care staff, opening up the opportunity to identify carers and offer support / information and advice and a referral to the local carers service
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Conclusion If carers are given information, support and advice throughout their caring role, the experience would have been less stressful, a little easier and they may well have been able to care at home for longer
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Good Practice examples
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Dementia Services at Suffolk Family Carers Caring for dementia with confidence Caring for Dementia with Confidence is our 3 week information and support programme designed to help you consider all of the elements involved in caring for someone with dementia and how to look after yourself too. • Week 1 – ‘navigation’ benefits peer support & the programme • Week 2 – ‘coping’ explores the challenges caring communication etc • Week 3 ‘resources’ Financial other local support looks at personal health and wellbeing © Carers Trust
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Carers who have attended the course said… “There is help available. There is no need to feel alone” “I'm not silly, dementia is a real disease and it's ok to be upset, tired etc.” “This was an excellent programme. It was great to meet with other carers” “Good balance between our own comments and discussion and information provided” We use an initial and final questionnaire to measure any changes to their knowledge, wellbeing, etc
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Wrap around support • Carers Assessments - Suffolk Family Carers supports Adult Carers right to a Carers Assessment and undertakes these, for Carers across Suffolk • Information Line - A Family Carer can speak to a trained family carer advisers who can discuss their caring role and how it affects them and what support can help • Fire and Carers Together (FACT) - We work in partnership with Suffolk Fire & Rescue to keep the Family Carer and the person they care for safe in the event of a fire. • Primary care and hospital support • Advocacy • Moving and handling • Emergency planning • Access to groups • Talk and support © Carers Trust
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Crossroads Care In the Vale EMI Direct carer support, throughout the caring experience Individual counselling Couple's counselling at the early stage of the illness Social groups for carers & relatives Support groups for carers; including one in the evening Time limited group (CAMEO) for when caring has ended
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Support through the stages of dementia Early stage of the dementia Domiciliary support Social inclusion groups / luncheon clubs / men's group Mid stage of the dementia Domiciliary support, Social inclusion groups as above Day centre perhaps 1 or 2 days per week/ EMI day centre six days per week. Later stage of the dementia Domiciliary support, perhaps up to 28 calls x 1 hour per week (Breakfast & personal care, lunch, teatime and evening) Day Centre, perhaps 4 weekdays and 1 day at the weekend © Carers Trust
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Crossroads SW Partnership Supporting Carers Most patients have a carer and we aim to:
Better outcomes ,holistic approach ,reducing social isolation, reliance on health services Reduce pressure on carers, Increase awareness of support, signpost early Leading to greater community resilience and sustainable care in the community
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The Crossroads Alliance partners will provide: Improved joined up support for carers which will enable us to reach more carers and identify them earlier. We will: •Increase the number of carers assessments completed in North Somerset, ensure a greater profile for carers ,signpost more carers to support services at an earlier stage, reduce the number of carers reaching crisis point •work collaboratively to benefit patients and carers
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The Crossroads Alliance partners are: Alliance Living Crossroads Care North Somerset Age UK Somerset North Somerset Community Partnership
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How we help: Carers Assessments Information and advice carers support groups Training & signposting Befriending Avoiding carer guilt Create personal space Better managed stress and anxiety Strengthened local support unit Stronger and more resilient carers Reduced reliance on a main carer © Carers Trust
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Camden Carers Centre Supporting people with dementia and their carers Camden Carers Centre were funded for three years (finishing in March 2016) by City Bridge Trust Additional funding from London Borough of Camden Promote good relationships between carers and the people with dementia they support, to prevent relationship break down We offer variety of support and day leisure opportunities for people with dementia and their carers Proven that people reconnect with each other in very clear and often poignant ways This type of service is unique in the Borough.”
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What we offer Remembering Yesterday, Caring Today – 14 week reminiscence programme Creative Memory Project (follows RYCT) – making memory boxes together Cognitive Stimulation Therapy group & parallel carers’ group Leisure opportunities for people with dementia & carers Annual street party celebrating all that has been enjoyed over the year
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Feedback from carers & the people with dementia they support “At first I was completely lost, but now feel more calm and able to cope”. “A wonderful opportunity for my husband to socialise and still feel connected.” “I feel we were extremely lucky to have had all these wonderful opportunities!” “The activities we experienced made us both feel more positive”. "We’ve never done anything like this before and I really enjoyed it”!
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NEWCIS in association with Puff Clock Communications & Training Caring, Learning & Living with Dementia Organised and facilitated by independent dementia specialist (Registered Nurse ) Funding obtained Flintshire County Council This course seeks to support carers of people with dementia(s) and / or memory loss, no dementia diagnosis needed to attend. Key areas: carer stress management and carer education. Peer support is a key contingent of the programme Measure We record if they feel more confident to care and less stressed following the programme "Now I feel able to carry on in my caring role." ( 90 year old man caring for his wife ) © Carers Trust
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Course content Stress Management training includes practical sessions with qualified practitioners Mindfulness, art therapy, relaxation Training in physiology of dementia, continence issues, enhancing communication, nutrition, dementia friendly environments, and medications in dementia. ‘Living bereavement,’ emotions and healthy sex lives in dementia are explored with a Psychologist. GP and Solicitor provide their expertise to the group. Information on care services, financial options, and telecare is provided from local authority. Additional tailored information, (for example on early onset dementia or dementia with learning disabilities) © Carers Trust
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D.I.S.C Dementia Information & Support for Carers Service started 10 years ago Hosted by Sandwell Crossroads Funded by Sandwell & West Birmingham and Cross City CCG Operates in the old Heart of Birmingham PCT area
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What we offer Liaising with District Nurses, OT’s and Social Workers Continence advice and support Finding the right care such as daycentres, care homes and care agencies Talking to the wider family Benefits advice Support groups Telephone support Staff members with a diversity of cultural backgrounds © Carers Trust
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Our strengths We build relationships with our carers over a long period of time We can often step in to offer support before a crisis develops We bridge the gap between clinical diagnosis and families coping alone. Carers feel welcome – 14 of them formally volunteer in supporting other carers We are carer lead, we listen to our carers and develop services to meet need We all feel very passionate about our service! © Carers Trust
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What about the Outcomes? After year 1… 84 families seen by the service in the first year All carers showed an increase in self reported quality of life and satisfaction in the service A significant cost saving in terms of unplanned admissions, A+E attendances as well as delayed/avoided admissions to care and nursing homes Staff from all partnerships feel better supported and able to help people with dementia and their Carers © Carers Trust
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What about the partnership between SCC and the Admiral Nurse Service? End of March 2013 - £950k re-ablement transfer from CCG Current funding stream Better Care Fund Admiral Nurse developed in partnership, paid for by health but managed by the Local Authority Individual drop-in appointments at SCC were set up to allow access to a wider range of carers and build capacity in staff team Hour long sessions of support and advice with the potential for more intensive work if needed Reaching Carers who may not wish to have traditional contact with the Local Authority © Carers Trust
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Links:
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Thank you Ruth Hannan:
[email protected] Louise Marks:
[email protected] Mob: 07971448765
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