Assistive Technology? A Carer’s Perspective Dame Philippa Russell DBE Vice-President, Carers UK E-mail: prussell@ncb.org.uk

Assistive Technology – new opportunities for carers or ‘the march of the robots’? A reminder about the ‘hidden army’ of carers 6.4 million carers (640,000 dementia carers). Increasingly complex nature of care – with increase in multiple health conditions and growth in number of ‘sandwich carers’ who provide intergenerational care for more than one person. 54% of carers give up work to care – with serious financial consequences. An ageing population – negative images of ‘bed blockers’ and uncaring families but limited awareness of potential of assistive technology to reduce admission to residential care and enable whole families to enjoy quality of life.

Managing complexity - Barbara’s story about caring at home and ‘co-producing’ a good life for her husband with dementia. Family carers increasingly manage a ‘web of care’. Family carers facing increasingly challenging roles – number of people with 3 or more long-term conditions predicted to rise from 1.9 million to 2.9 million by 2018. Increase in dementia and ‘new survivors’ of younger people with very complex disabilities. RCGP (2017) found that ALL carers in survey showed some anxiety, depression or tiredness in their roles. Biggest problem communication, recognition of their role as ‘experts by experience’ and ‘co-producers’ of care and support.

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

Assistive technology – from institution to community. Simon’s story

Assistive technology – Managing the transition from care home to ‘my home’ – with confident family carers! Technology allows us to plan for person-centred care at home, tailoring activities and support to individual needs. It offers creative solutions to safeguarding, maximising independence and sharing knowledge and problem solving.

Whose life is it anyway? Simon’s choices and his pathway to independence thanks to assistive technology! A home of my own, my own front door – nobody interfering with my things! Getting a life in my community (horticulture and Partners in Art). Feeling SAFE: Support when I need it – from people I know and trust. A good night’s sleep (no staff opening and shutting my door) – and peace of mind for Mum!

Simon’s ‘smart house’ – a good life for him and his family in the local community! And a reminder that Assistive Technology can and does offer cost- effective quality living and support to carers and their family members.

Assistive Technology – Brian and Margaret’s story - Helping carers ‘to keep going and to get a life!’ PSSRU (2017) A reminder that carers are a scarce resource! Demand for family carers for people over 65 expected to increase by over 1m in next three years. 73% of carers who had not had a break in a year or more reported a deterioration in their mental health, 65% in physical health. [Carers UK, State of Caring, 2017] 40% of unpaid carers had not had a break in more than a year while 25% had not received a single day away from caring in five years.’ [cited in CQC, State of Health and Care in England, 2016-2017]

And a reminder – family carers remain carers even when their older relative moves to a residential setting! ‘Personalisation in care homes matters just as much as in the family home’. ‘Assistive technology helps us keep in touch with family carers – and with each other! It links us to the outside world – even the GP seems more interested because he knows us on line!’ ‘Who says older people can’t get on line? My mother’s life has been transformed by being able to skype us (even sister in NZ!) Most of the residents in my mother’s nursing home are really frail and ill – I worried, would they get the healthcare they really needed, would their medication, their dressings be sorted properly. But with telehealth AND telecare, we all ‘sing from the same song-sheet’. Best of all, our mother says that she hasn’t gone into care (horrid phrase’, she has just changed her address for a place with a better garden!’

And looking into the crystal ball And looking into the crystal ball! Recognising the potential of Assistive Technology for young ‘next generation’ carers. 196,000 young and young adult carers in England. 15,000 children care for more than 50 hours a week. 45% of young carers report mental health problems. They lose on average 3 days a month from college or uni because of caring.

Keeping People Safe at home – the big challenge (and the big opportunity) for assistive technology Maintaining privacy and dignity with security – sensors and alarms Maintaining independence – reducing visits, ‘sleep-over’ staff or family members’ on call. Medication and self care – and sharing programmes and information with family and health/social care. ‘The ethics of intrusion’ –CCTV and spy cameras, supervision or invasion of privacy? ‘Robots not people’ – ‘connecting not replacing real people’. Do the Commissioners know enough? We need ‘whole area’ information and support systems.

And a final carer’s perspective – Getting the message out and how to pay for greater connectivity. Care Act assessment and support for carers: we need to ensure that carers know about the possibilities of assistive technology and who can give advice and offer ‘whole system support’ to local authorities and others (eg Carers UK). Using Personal Budgets and Personal Health Budgets more creatively (and not forgetting self funders). Work proactively with community and other groups to improve digital connectivity. We need to end the assumption that older people (and some disabled people) will never embrace technology. They can and do!

Looking forward – the challenge Looking forward – the challenge! Assistive technology can change carers’ lives – BUT we still need to create awareness, promote its potential. It can change lives! In designing new services, new technology can play a major role in making sure people are cared for safely and in maintaining their independence….However, new technology needs to be well thought through and implemented….we need an open conversation with the public about both the benefits and the risks of change and innovation and what they means for people.’ [CQC, The State of Health and Social Care in England 2016/17]. ‘We never realised what a transformation assistive technology could make – our parents feel safe, connected and we’ve got our lives back.’ [Carers UK parent, 2017]