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

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

8. Proposed components for living well with
dementia (“post diagnostic support”)

10. 1. Multiple morbidity (co-morbidity)

13. 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%).

15. 2. Complexity

18. 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

20. 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.

25. Brooker and Latham (2016)

26. 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.

29. 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.

32. Lothian Sexual Health

33. 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.” >

34. 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.”

35. Community based rehabilitation
(World Health Organization)

36. 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.

38. 7. Interdependence and
independence
• care ‘transactions’ can be disempowering
• autonomy, dignity, independence, choice,
control, continuity of care

44. 8. Wellbeing

45. Rahman (2014)

47. 9. Person-centred care

49. • 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.

50. 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)

52. 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.

54. 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’

55. 10. Care planning

56. • 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).

58. Proposed components for living well with
dementia (“post diagnostic support”)

60. “…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.)