THE RIGHT KIND OF CARE AND SUPPORT

1. THE RIGHT KIND OF CARE AND SUPPORT Barbara Pointon MBE Former carer Ambassador for Dementia UK and Alzheimer’s Society Member of Standing Commission on Carers barbara@pointon.name

2. Malcolm aged 51, just after he was diagnosed

3. Caring at home • Two thirds of people with dementia are cared for at home • Weight falls on family carers and domiciliary care staff • No point in raising diagnosis rate if no increase in support • Greatest increase in the very old (90s and 100s), whose children are likely to be too frail themselves to care for them. • Carehomes full of the oldest old? More people having to be cared for at home? • Care and support at home given by the carer begins at diagnosis: bridging the significant time between diagnosis and using services

4. The wrong kind of care • Contradicting or correcting – just let it go! • Treating the person with dementia like a child • Being bossy, taking over (because it’s quicker?) • Overstepping the fine line between caring and controlling – undermines the person’s sense of self-hood. • Common presence of visuo-spatial perceptual problems from the start – the brain misinterprets what is seen • Just Go With the Flow, however bizarre it seems • Caring suddenly gets easier

5. The way forward? • More depth of training for all domiciliary care staff • A robust service for the family carer. Not just signposting. • “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 & Muers 2009) • A bargain: 2 good outcomes for the price of 1. • Ongoing trickle of practical advice and emotional support for the carer will prevent expensive crises further down the line • GP responsible for seeing that carers are regularly assessed, including self-funders – the gateway to support

6. The right kind of support for the carer • Personalised advice on offering care and support • Signposting for financial and legal advice • How to find activities and local peer groups • No carer should walk alone – emotional support • A single point of contact • A human being – with whom the carer, person with dementia can build up a triangle of mutual trust. • An enhanced version of ‘Dementia Adviser’ – a Care and Support Adviser • Well-trained in dementia care, personal experience if possible and a kindly personality.

7. Hallmarks of quality standards – the right kind of care • ‘Training’ v. ‘Understanding’. • Not what we do but the way that we do it that counts. • Seeing the person, not the dementia • Understanding what it feels like to have a dementia • Not forgetfulness: no memory is laid down • Being with them in their right now or distant past • Chat and laughter are as important as tasks • Domiciliary care: adequate time for the job. Rushing produces resistance. Flexibility – each day can be different • Meeting resistance: can’t concentrate on 2 things simultaneously – so use music (of their taste) to distract.

8. Chat and laughter as important as tasks

9. Hallmarks of good care: the ‘softer’ stuff • Dealing with repetitive questions • Living in a different time in their head • Protecting their feelings • Personal care coloured by memories of when they were young – may explain resistance to today’s standards of hygiene • Don’t try to make things ‘normal’ • Preserve dignity and be respectful in offering personal care

10. The middle stage: perplexing behaviours – the right kind of response • “He’s doing it deliberately to annoy me” • Reasons behind hiding and hoarding • Going walkabout – electronic devices • Help from the community – relief from 24/7 vigilance • Is it really incontinence? Try other solutions first. Not using pads for the benefit of the staff. • The story of the mirror; unnecessary use of anti-psychotics • Knowing a person’s past history – Life Story Books • Former jobs and hobbies – all is not what it seems • And Still the Music Plays (Stokes, G) – a must read

11. The middle stage: finding suitable activities • Past likes and dislikes may not persist • The hands need something to do, whatever our age. • Many incentives for residents in carehomes • Engaging wholeheartedly with the person with dementia - the work of David Sheard. • Easy access to open air and pathways with no dead ends • Wider opening of doors to the community – mutual benefits

13. The advanced stage of dementia – the right kind of nursing care • Malcolm was cared for by myself and live-in social care staff • Access to expert advice in dementia nursing • Nursing homes; a registered nurse isn’t enough • Usual nursing procedures may not apply. Training required. • Loss of mobility – need for a standing hoist (Visuo- spatial problems). Primitive grip returns. • Catheterisation not recommended in dementia • Swallowing problems – right level of soft food (16 levels) and cold, thickened drinks.

14. Continuity of staff, plus time and patience are essential.

15. The advanced stage of dementia – the right kind of nursing care • PEG feeding is not recommended in dementia • All medication should be reduced in line with severity of dementia • Dementia pain scales • Oral hygiene – swallowable toothpaste • Not the usual kind of constipation – it’s the push that goes. • Not being bedbound – several transfers a day • Dementia from Advanced Disease to Bereavement (Pace, V. et al Oxford Specialist Handbooks OUP)

16. Out-of-Hours Doctors & paramedics Consultant Continence Adviser The Web of Care (Last 7 yrs) 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

17. COGNITION, ABSTRACT THINKING, KNOWLEDGE, FINER SKILLS CONTROL OF BASIC PHYSICAL FUNCTIONS PSYCHE, 5 SENSES AND EMOTIONS ESSENCE/ SPIRIT

18. Care beyond the physical : maintaining a meaningful relationship – the right kind of care • Stimulating the 5 senses- meeting psychological, emotional and spiritual needs • Sight: smiley faces – several changes of viwpoint – red/yellow • Taste: stronger, sweeter flavours; patient oral feeding-No PEG • Smell: favourite perfume/aftershave; aromatherapy • Hearing: music of their choice, continue to talk, singing • Touch: the most important of all – stroking , hugs to calm night fears • Psychological: feeling safe, tranquil environment • Spiritual: feeling loved and cherished.

19. Barbara and Malcolm, January 2006

20. Towards enhanced quality of care: • Share good practice • Value your staff • Think: • Holistic care • Everyone understanding what it feels like to have a dementia • Competence and compassion • A workforce bringing hands, head and heart to the job • A trusting triangular relationship between the person with dementia, their carer and any health or social care professional involved with them, right to the end

21. The right kind of care