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Living Well with Dementia
Dr Shibley Rahman
MA PhD MRCP(Lond) LLM MBA
British Geriatrics Society
West Midlands Regional Me...
Proposed components for living well with
dementia (“post diagnostic support”)
1. Multiple morbidity (co-morbidity)
Gordon AL, Franklin M, Bradshaw L, Logan P, Elliott R, Gladman JR.
Health status of UK care home residents: a cohort study...
2. Complexity
Examples of features of complexity
• Neither the system nor its external environment are, or ever
will be, constant
• Indi...
3. Rights
• Rights are not just legal ones, enshrined in
statutory documents, but also are moral ones.
• The question is o...
Brooker and Latham (2016)
4. Interoperability
NHS England (2015)
e.g. “semantic interoperability”
Semantic interoperability is the process of ensuri...
5. Health (World Health Organization)
“Right to health”
• The WHO Constitution enshrines “…the highest
attainable standard...
Lothian Sexual Health
6. Enablement
e.g. Newham adult social care
“Enablement (sometimes called re-ablement or
re-enablement gives adults the op...
Enablement
e.g. Newham adult social care
> “Enablement is carried out at your home. by
specially trained enablers for up t...
Community based rehabilitation
(World Health Organization)
Allied Health Professionals are a
critical part
• The AHPs include 12 professions regulated by the Health
and Care Profess...
7. Interdependence and
independence
• care ‘transactions’ can be disempowering
• autonomy, dignity, independence, choice,
...
8. Wellbeing
Rahman (2014)
9. Person-centred care
• A person with dementia is at all times in
continuity with his or her past, present and
future (even though the event of ...
Put bluntly, it’s impossible to provide ‘person-
centred care’ e.g.
• if you don’t look after your own staff in a
person-c...
RCP report - September 2012
Hospitals on the edge? The time for action
Overview of challenges facing acute hospitals
• Inc...
Oliver D Progress on dementia in hospital. BMJ. 2016 Apr
22;353:i2204. doi: 10.1136/bmj.i2204.
• As many as 40% of hospita...
10. Care planning
• The advice in fact couldn’t be clearer – that the
person with dementia, carer and professional
should all share in the d...
Proposed components for living well with
dementia (“post diagnostic support”)
“…The time has come to abandon disease as the primary
focus of medical care. […] The changed spectrum of
health conditions...
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
My talk for BGS West Mids 22/9/16 "Living well with dementia"
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My talk for BGS West Mids 22/9/16 "Living well with dementia"

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A brief introduction to what I consider to be important features of what is loosely called "post diagnostic support" for people with dementia.

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My talk for BGS West Mids 22/9/16 "Living well with dementia"

  1. 1. Living Well with Dementia Dr Shibley Rahman MA PhD MRCP(Lond) LLM MBA British Geriatrics Society West Midlands Regional Meeting 22nd September 2016, 4 pm Novotel City Centre Birmingham
  2. 2. Proposed components for living well with dementia (“post diagnostic support”)
  3. 3. 1. Multiple morbidity (co-morbidity)
  4. 4. Gordon AL, Franklin M, Bradshaw L, Logan P, Elliott R, Gladman JR. Health status of UK care home residents: a cohort study. Age Ageing. 2014 Jan;43(1):97-103. doi: 10.1093/ageing/aft077. Epub 2013 Jul 17. The 10 most common diagnoses (number; percentage of participants) were dementia (141; 62%), essential hypertension (102;45%), primary generalised osteoarthritis (83;37%), cerebrovascular disease (71;31%), osteoporosis with pathological fracture (45;20%), chronic renal failure (35;15%), non-insulin-dependent diabetes (34;15%), recurrent depressive disorder (33;15%), atrial fibrillation/flutter (31;14%) and chronic ischaemic heart disease (30; 13%).
  5. 5. 2. Complexity
  6. 6. Examples of features of complexity • Neither the system nor its external environment are, or ever will be, constant • Individuals within a system are independent and creative decision makers • Uncertainty and paradox are inherent within the system • Problems that cannot be solved can nevertheless be “moved forward” • Effective solutions can emerge from minimum specification • Small changes can have big effects • Behaviour exhibits patterns (that can be termed “attractors”) • Change is more easily adopted when it taps into attractor patterns
  7. 7. 3. Rights • Rights are not just legal ones, enshrined in statutory documents, but also are moral ones. • The question is of course how you make these rights ‘real’ for people, rather than an abstract exercise, and there’s been a lot of attention, some of it successful, in embedding a rights-based culture in provision of dementia care.
  8. 8. Brooker and Latham (2016)
  9. 9. 4. Interoperability NHS England (2015) e.g. “semantic interoperability” Semantic interoperability is the process of ensuring the each system can understand the information received from the others. It must ensure that information can be used and interpreted without ambiguity.
  10. 10. 5. Health (World Health Organization) “Right to health” • The WHO Constitution enshrines “…the highest attainable standard of health as a fundamental right of every human being.” • The right to health includes access to timely, acceptable, and affordable health care of appropriate quality.
  11. 11. Lothian Sexual Health
  12. 12. 6. Enablement e.g. Newham adult social care “Enablement (sometimes called re-ablement or re-enablement gives adults the opportunity and confidence to relearn and regain some of the skills they may have lost because of poor health, disability or after a spell in hospital.” >
  13. 13. Enablement e.g. Newham adult social care > “Enablement is carried out at your home. by specially trained enablers for up to a 6 week period. Enablers will work with you to enable you to do these activities yourself. Equipment may be provided as part of the enablement service to promote independence. There is no charge for the service for 6 weeks.”
  14. 14. Community based rehabilitation (World Health Organization)
  15. 15. Allied Health Professionals are a critical part • The AHPs include 12 professions regulated by the Health and Care Professions Council (HCPC), which collectively make up the third largest workforce in the NHS. • They work across a range of sectors including health, social care, education, academia, voluntary and private sectors across the life course. • The 12 professions include physiotherapists, occupational therapists, podiatrists, dietitians, speech and language therapists, paramedics, radiographers, orthoptists, prosthetists and orthotists, art therapists, music therapists and dramatherapists.
  16. 16. 7. Interdependence and independence • care ‘transactions’ can be disempowering • autonomy, dignity, independence, choice, control, continuity of care
  17. 17. 8. Wellbeing
  18. 18. Rahman (2014)
  19. 19. 9. Person-centred care
  20. 20. • A person with dementia is at all times in continuity with his or her past, present and future (even though the event of diagnosis can be a significant life-changing one in itself). • And a person with dementia is intimately connected to his or her own environment.
  21. 21. Put bluntly, it’s impossible to provide ‘person- centred care’ e.g. • if you don’t look after your own staff in a person-centred way (leading to burnout), • if there’s rapid turnover of teams on a daily basis (for example due to rota gaps)
  22. 22. RCP report - September 2012 Hospitals on the edge? The time for action Overview of challenges facing acute hospitals • Increasing clinical demand. • Changing patients, changing needs. Nearly two thirds (65%) of people admitted to hospital are over 65 years old, and an increasing number are frail or have a diagnosis of dementia. • Fractured care. Hospital doctors have reported the lack of continuity of care as their biggest concern about the current health service. [rota gaps?] • Out-of-hours care breakdown. Emergency admissions activity at weekends is around a quarter lower than the rest of the week [NHS 24/7 Jeremy Hunt] • Looming workforce crisis in the medical workforce.
  23. 23. Oliver D Progress on dementia in hospital. BMJ. 2016 Apr 22;353:i2204. doi: 10.1136/bmj.i2204. • As many as 40% of hospital patients over 75 have dementia • “It travels with them, although they’re generally admitted for other primary reasons.” • “They’re more likely to die in hospital and to experience decompensation, depersonalisation, and harms.” • “Two reports, from the NHS Confederation and the Alzheimer’s Society,9 10 found that people with dementia occupy about a quarter of beds in acute hospitals. They stay about a week longer on average. Nurses feel untrained, unskilled, and less confident in assessing or treating them.” • liaison psychiatry models within acute hospitals / workforce training / specialist practitioners / RCP ‘Future hospitals’
  24. 24. 10. Care planning
  25. 25. • The advice in fact couldn’t be clearer – that the person with dementia, carer and professional should all share in the development of care plans. • The projection of future care issues might be a good way to anticipate problems, such as in avoiding hospital admissions (say in ambulatory care sensitive conditions).
  26. 26. Proposed components for living well with dementia (“post diagnostic support”)
  27. 27. “…The time has come to abandon disease as the primary focus of medical care. […] The changed spectrum of health conditions, the complex interplay of biological and non-biological factors, the raging population, and the inter-individual variability in health priorities render medical care that is centered primarily on the diagnosis and treatment of individual diseases at best out-of-date and at worst harmful…” (Tinetti ME, Fried T. The end of the disease era. Am J Med 2004;116:179–85.)

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