1. Volunteers as enablers of psychosocial dementia care Tony Warnes, Sheffield Institute for Studies on Ageing University of Sheffield, UK Social Capital and Volunteering in Modern Ageing Cities: Building Intergenerational Inclusion 15-19 December 2008, City University of Hong Kong

2. Background and inspiration The themes of this conference, particularly inter- generational relations, volunteering and ‘positive ageing’ A social scientist working in a medical school and on collaborative projects with nurse researchers Research on the delivery of a training scheme for the staff of residential care homes Awareness of the need to transform the care of people with dementia Experience as a trustee (board member) with two non-profit organisations in Sheffield, England: The Darnall Dementia Group and Sheffcare Ltd

3. Plan of presentation Rapid growth of the population with dementia The deficiencies of dementia care Current roles of volunteers The Darnall Dementia Group model and the potential of volunteers Practicalities: what needs to be done

4. The population with dementia: the growing challenge

5. South Yorkshire

6. 2031 2006 2031 2006

7. The care development agenda From the perspective of promoting the quality of life and care of people in advanced old age, a great challenge for all societies is how best to support and treat people with dementia. Even the richest countries are only just beginning to address systematically how to raise the quantity and quality of ‘dementia care’.

8. The mission to develop psychosocial care

9. Two approaches to dementia care Biomedical modelPsychosocial model Models of the disorder Incurable and progressiveSufferer retains ‘personhood’, capacities, an emotional life and social needs Attributes of care Emphasises hygiene, protection, restraint and medication. Indicates residential settings. Highly individualised and intensive support that emphasises activating remaining capacities. Indicates supported living in the community. Outcomes of care Passivity, distress, depress- ion, increased disturbed behaviour. Relatives excluded and feel guilt. Cared-for continue to feel valued, less depression. Family members involved and feel useful. Development priorities High-tech medical dementia-care centres. Pharmaceutical, neurolog- ical and genetic research. Entirely negative, apart from the hope of a cure? Education, advice and support centres for family carers. R&D into effective of psychosocial interven- tions and training. Role of assistive and telecare technologies. Opportunity for continuing recognition of the individual’s personhood and for humane and creative care + support?

11. Early steps in building psychosocial dementia care Both biomedical treatment and psychosocial forms of care need to be developed in every country. There are many practice-development or service opportunities in dementia care for paid staff and volunteers. The following innovations make substantial contributions to improving the quality of life of people with dementia and their carers: Membership societies for people diagnosed with dementia xxand their carers Information, advice and patient/carer support services Training in the delivery of person-centred or psychosocial care Expanded range of day-centre and home-support services Specialist training and service development centres Experimental types of small, specialised homes on Swedish xxand Japanese models

12. Dementia treatment and care as national priorities United States National Institute of Aging funding of specialist dementia research and treatment centres Japan Large investment in specialist residential treatment centres (group homes) and staff training United Kingdom National Dementia Strategy shortly to be announced

13. Consultation on a UK Dementia Strategy 2008 Foreword by Alan Johnson, Secretary of State for Health Dementia is a devastating disorder for both those who develop the illness and the families who care for them. It is also very common, with over 570,000 people living with dementia in England. … It has been estimated that the cost of dementia care exceeds that of cancer, heart disease and stroke combined. … the number of people with dementia is projected to double in the next 30 years. … a strategic approach is vital. The Government has identified dementia as a national priority. In August 2007, we announced a one-year programme to develop a National Dementia Strategy. There will be three main themes: – improving public and professional awareness – ensuring early diagnosis and intervention – improving the quality of care for people with dementia and xisupport for carers.

14. Transforming the Quality of Dementia Care Consultation on a National Dementia Strategy Chapter 3 High-quality care and support In many ways this is the most complex of the three themes that we have considered as part of the National Dementia Strategy. The scope for improving the quality of care and support is very broad, with room for improvement in almost every area from diagnosis to the end of life. Here we have chosen to focus on the four settings where the greatest need has been identified to date: general hospitals, home care, intermediate care and care homes.

15. Around two-thirds of the residents of care homes now have dementia or other severe cognitive disorders There are high rates of depression, and higher rates of passivity and boredom According to one survey, 54% of carers reported that their relative did not have enough to do, and the typical resident spent just two minutes interacting with staff or other residents over 6 hours (excluding time spent on care tasks) Around 15% of staff-resident interactions are ‘negative’, around 15% ‘positive’, and around two-thirds neutral. The very limited availability of activities and opportunities for occupation is a major determinant of quality of life, and affects mortality, depression, physical function and behavioural symptoms The deficiencies of dementia care in care homes Put simplistically, too often the care provided in care homes to a person with dementia worsens their condition But... the majority of staff are conscientious, dedicated, humane and highly responsible. The problems are that (1) they do not have the needed skills, and (2) there are not enough of them

16. Volunteers and dementia care: currently in the UK

17. Get involved Volunteers for the......... Get involved Do you have some time to spare? Everyone has something to contribute to the Society. Volunteering is flexible, ranging from a few hours a year to several hours a week. It's your choice. Volunteers help us in local branches, in our areas, in the regional and country offices, as well as at our central office in London. In return we'll reimburse agreed out of pocket expenses and provide you with all the information and support you need. Join our team and make a real difference. You can now apply to volunteer online or you can download the application form and post it to us. We'll get back to you within 10-14 days at the latest.

18. Apply onlineRoles availableOur volunteers Fill in our online form to express your interest in being a volunteer There are many volunteering opp- ortunities across Alzheimer's Society Meet some of our volunteers and read about their reasons for volunteering

19. There are many volunteering opportunities across the Alzheimer's Society. We have listed some examples below to help you. If your preferred activity is not listed please still get in touch and we'll try to find a role that suits your interests: Administrative support Befriending services Campaigning activities Carer support groups Financial guidance and support Fundraising Information and awareness Public relations (publicity) support Media Social activities for people with dementia Volunteer coordinator/recruiter/supporter Luncheon clubs, dementia cafes and drop-in centres Quality Research in Dementia, evaluation Volunteer at one of our Christmas card shops Alzheimer’s Society: types of volunteering roles

20. Sheffield Branch Fundraising and Volunteering Do you have any time to spare? Would you like to support the work being done by the Sheffield Branch of the Alzheimer's Society? The branch is always pleased to hear from new volunteers. Volunteers have an important role in many activities, including fundraising, befriending and admin support. Our fundraising takes various forms, ranging from stalls at fayres to supermarket collections Please contact the Fundraising and Awareness Officer if you would like find out more.

21. The case for volunteers’ as providers of psychsocial care Not to replace family care, but to support family carers Not to replace paid staff, but to complement them

22. DDG is a voluntary organisation in Sheffield that provides person- centred support to people with dementia and their carers. Its day centre is run by two staff and a team of volunteers. It provides: One-to-one interactions: conversations, activities (looking at newspapers, magazines, photographs, reminiscence (local history) materials, arts and crafts Group activities: singing, exercises, table-top games, ball games, dancing, theatre/drama Entertainments: drama groups, choirs, readings Lunch, including involvement in preparation and clearing away Occasional trips The Darnall Dementia Group

23. Two paid staff: Development Worker. Qualified social worker, worked in dementia care for nearly 20 years. Qualified ‘dementia care mapper’ Community nurse. Qualified nurse, seconded from local National Health Service agency. Provides ‘medical cover’. Qualified ‘dementia care mapper’ Diverse volunteers: Social work, nursing, occupational therapy and medical students on training placements Recruits through the city’s two university’s student union ‘community service offices’ Recruits through Voluntary Action Sheffield, a body that represents many charities and non-profit organisations in the city Recruits through word of mouth Most importantly, former carers of attenders DDG: care and support capacity

24. Tilly lived alone after being discharged from hospital, where she had received treatment for depression. She was described as having 'mild to moderate' dementia. DDG offered Tilly’s daughter information and support and invited her to the carers' support group. Being sad and withdrawn, Tilly first rejected a place at the day centre, but eventually she agreed. At the day centre, at first Tilly would not join in activities and spoke little – apart from swearing – but she joined in ball games despite her physical disabilities. She enjoyed football, indoor bowls and skittles and the group singing. Her pleasure in strong colours was apparent when she was asked to select a birthday card. She helped with choosing, colouring and writing in various craft activities. Over time Tilly showed clearer signs of belonging. She swore less and began to seek reassurance when anxious and responded cheerfully when greeted. Case study of an attender at DDG

25. Benefits, tasks and challenges

26. Beneficial outcomes Increases capacity to provide psychosocial care Draws on exceptional experience and empathy of people who have cared for (usually) a parent or spouse with dementia Provides the bereaved carer with a rewarding role in caring for others and in training and supporting those with less knowledge of dementia Provides trainee health and social carers with exceptional access to personal experience of dementia care – exceptional opportunities for inter-generational transmission of knowledge and experience

27. Impediments to widespread adoption Heavy load on managers and professional staff in managing availability of volunteers, their training and ‘work discipline’ Has proved difficulty to sustain the role of volunteers in British care homes Caring professions highly organised and resist, as they perceive, transfer of their roles to volunteers Real problems of maintenance of minimum standards of care (to satisfaction of regulators) and of legal liability Volunteering incompatible with for-profit provision of long-term care?

28. Conclusions Developing the volunteers’ role in dementia care would make a substantial contribution to... * Public education about dementia and the care and support of people with dementia * Raising the capacity to provide psychosocial dementia care * Providing rewarding (and challenging) roles for a number of older people following traumatic loss * Increasing opportunities for learning from experience rather than abstractions Not a panacea, by no means easy to achieve, but well worth a concerted attempt but well worth a concerted attempt

29. With thanks to all the care provider organisations in South Yorkshire that responded to our survey of ATT knowledge and use