Dementia Education for Primary Care

Paul Russell, GP Clinical Lead Older People Waltham Forest

Buz Loveday, Specialist Dementia Trainer

What do GPs think about dementia?

NAO Improving dementia services in England – an interim report. 2010

Dementia: Rising Up The Public Agenda (Key Milestones)

• Pre 2007 – reports by National Audit Office, etc. highlighting the need for focused work on dementia

• February, 2009 – National Dementia Strategy published, jointly authored by Professor Sube Banerjee

• NHS Operating Framework 2012/13 – Dementia included as an area requiring particular attention (10 clear action points)

• 26th March, 2012 – Prime Minister David Cameron announces “Challenge on Dementia”, to deliver major improvements in dementia care and research by 2015

• Throughout 2012-13 – Numerous policy/implementation developments – Government’s Mandate to NCB, Outcomes Framework 2013/14, CCG planning, National CQUIN for Acute Trusts, DES for primary care, etc

• 11th December, 2013 – G8 dementia summit

“So my argument today is that we’ve got to treat this like the national crisis it is. We need an all-out fight-back against this disease…  “We did it with cancer in the 70s. With HIV in the 80s and 90s… Now we’ve got to do the same with dementia.”

The cost of the dementia challenge

The Case For DiagnosisWorld Alzheimer’s Report 2011

1) Optimising current medical management2) Relief gained from better understanding of symptoms3) Maximising decision-making autonomy4) Access to services5) Risk reduction6) Planning for the future7) Improving clinical outcomes8) Avoiding or reducing future costs9) Diagnosis as a human right

The dementia diagnosis gap

Visual from the NHS Atlas of Variation, November, 2011 (based on 2009/10 data) – best to look at Dementia Prevalence Calculator figures

Dementia Diagnosis Gap(% people with dementia on GP registers, compared with expected prevalence)

London Average 47.1%

National Average 46%

Islington 70.8%(Best in country)

Harrow 37.1%(Worst in London)

Dementia Prevalence Calculator 2013

IMPROVE PRACTICE INCOME!

…. And don’t necessarily have to hit all the points.

Dementia

A decline of cognitive ability and behaviour primary and progressivedue to a structural or chemical brain diseaseNot secondary to sensory deficits, physical

limitations, or psychiatric symptomatology.to the point that customary social, professional

and recreational activities of daily living become compromised.

Clinical Symptoms of Cognitive Decline

• Memory loss is often the most commonly reported symptom: – Forgetfulness– Repeats self in conversation– Asks the same questions over and over– Gets lost in familiar areas– Can’t seem to learn new information (routes, tasks,

how to use a new appliance or electronics)

Clinical Symptoms cont . . .

• Presenting symptoms can also consist of changes in one or more of these areas:– Attention– Language– Visuospatial abilities– Executive function– Personality/judgment/behavior

Impairments in Attention

• Starting jobs but not finishing them

• Absentmindedness

• Difficulty following a conversation

• Distractibility

• Losing train of thought

• Problems expressing one’s thoughts in conversation (can’t find the right words)

• Consistently misusing words

• Trouble spelling and/or writing

• Difficulty understanding conversation

Impairments in Language

Impairments in Visuospatial Function

• Getting lost (even in one’s own home)

• Trouble completing household chores (using knobs or dials)

• Difficulty getting dressed

• Trouble finding items in full view

• Misperceiving visual input

Impairments in Executive Function

• Disorganisation

• Poor planning

• Decreased multi-tasking

• Perseveration

• Decreased ability to think abstractly

Changes in Personality or Behaviour

Quantitative change in behaviour:– Increase- disinhibition, impulsivity, poor self-

regulation, socially inappropriate

– Decrease- flat affect, reduced initiative, lack of concern, lack of interest in social activities (often initially mistaken for depression)

– Behavior not typical of premorbid personality

“Typical” Cognitive Aging

Encoding of new memories Slower to learn new tasks

Working memory May need more repetitions to learn new info

Processing speed Slower to respond to novel situations

• Objectively measured deficits in memory and/or other thinking abilities

• Subjective memory complaint • Normal ADLs• Prevalence rates vary widely depending on age and community vs

clinic sample

Mild Cognitive Impairment

(Petersen et al., 1999, 2001)(Petersen et al., 1999, 2001)

** ** Conversion to dementia is significantly higher Conversion to dementia is significantly higher in people with MCIin people with MCI

MCI MCI 12 - 15% per 12 - 15% per yearyear

Normal controlsNormal controls 1 - 2% per 1 - 2% per yearyear

Causes that Mimic Dementia (*but are treatable)

Toxic/metabolicMedications, B12 deficiency, hypothyroidism

Systemic illnessesInfections, cardiovascular disease, pulmonary

OtherDepression, sleep apnea,psychosocial stressors, drugs

*Treatment may improve, but not fully reverse, symptoms

GP Role in Diagnosing Dementia

What will you hear in clinic?

DEMENTIA DES: Facilitating Timely Diagnosis And Support For People With Dementia

• The GP practice undertakes to make an opportunistic offer of assessment for dementia to ‘at-risk’ patients and, where agreed with the patient, to provide that assessment.

• For the purposes of this enhanced service, ’at-risk’ patients are:

– Patients aged 60 and over with cardiovascular disease (CVD), stroke, peripheral vascular disease or diabetes

– Patients aged 40 and over with Down’s syndrome – Other patients aged 50 and over with learning disabilities – Patients with long-term neurological conditions which have a known

neurodegenerative element, for example, Parkinson’s disease.

• These assessments will be in addition to other opportunistic investigations carried out by the GP practice (for example, anyone presenting raising a memory concern).

General Enquiry:“Has the person been more forgetful in the last 12 months to the extent it has affected their daily life”

Cognitive Assessment in Primary Care• Helpful to have an informant present• Comprehensive clinical assessment

essential • Exclude causes that mimic dementia

– Infection, Medication, Hypothyroidism, Electrolyte imbalance, Anoxia, Depression, Head Injury

• Perform a cognitive test*– GP CPOG– ATMS– 6CIT

DEM003New diagnosis of dementia with record of;•FBC •Calcuim, Glu, Renal and Liver function •Thyroid function tests•B12 and Folate levels (Recorded between 6 months before or after entering on to the register)

* Dementia DES: Where there is concern over memory administer a more specific test to detect if the patient’s cognitive and mental state is symptomatic of any signs of dementia

6 item GPCOGPros:- Takes 3 minutes- Validated For

primary care- Linguistically and

culturally transferrable

Cons:- Confusing weighting

and scoring

Abbreviated Mental Test Score

Pros: - Simple to

perform and score

Cons:- Limited validity

data- Culturally specific- Takes 5 minutes

Diagnostic ChallengesDetecting (early) dementia can be difficult!•Altered health seeking behaviour in patient•Is this normal ageing? Is it change?•Clinical presentations can be similar (i.e. Depression)•Crude cognitive tests

In difficult cases….•Perform thorough clinical assessment; History (with informant), Examination, Cognitive test (Aware of the limitations)•Dementia is progressive – Reassess in 3-6 months

HOW WOULD YOU FEEL IF…..?

• You are asleep when suddenly you are woken up by a person you have never seen before, who starts trying to pull you out of bed.

• You overhear two people talking about you, saying that you don’t understand anything and you are incapable of doing anything for yourself.

• You’re far away from home in a country you’ve never visited before and where you don’t speak the language. You become separated from your friends and realise that you are completely lost.

• You are feeling really angry and upset about something, but everybody around you just keeps telling you that everything is fine and you should cheer up.

• You are at work when you start to get a stomach ache. Suddenly, without realising it’s going to happen, you defecate in your clothes.

He is asleep when suddenly he is woken up by a person he has never seen before, who starts trying to pull him out of bed.

Photo from ‘Openings’ – John Killick and Carl Cordonnier

HOW DOES HE FEEL…..?

  

Physical Individual- Visual impairment - Has always dealt well- Arthritis in neck with life’s knocks and shoulders - Good sense of humour - Has had to give up a job which he loved

Environmental Social - House of poor - Partner and family can’t design for wheelchair cope and expect him to - Only 2 wide doors ‘get on with it’ - No ramp at front door - Friends fuss over him- No stair-lift - Public treat him like a

child

Personwith

Dementia

Environmental Social

 

 

  Physical Individual

Symptoms or preventable difficulties? Repeats self in conversation Asks the same questions over and over Gets lost in familiar areas Starting jobs but not finishing them Difficulty following a conversation Distractibility Problems expressing one’s thoughts in conversation Trouble completing household chores Trouble finding items Misperceiving visual input Disorganisation Decreased multi-tasking Disinhibition Flat affect Reduced initiative Behaviour not typical of premorbid personality

time

Intactness of brain

Maximum functioning

Tom Kitwood 1993

Actual functioning

PARTNERSHIP

time

Intactness of brain

Actual functioning close

to maximum level

Dementia Annual Review1. An appropriate physical and mental health review for the patient2. If applicable, the carer’s needs for information commensurate with the stage of the illness and his or her and the patient’s health and social care needs3. If applicable, the impact of caring on the care-giver4. Communication and co-ordination arrangements with secondary care (if applicable).

DEM002The percentage of patients diagnosed with dementia whose care has been reviewed in a face-to-face review in the preceding 12 months

“…(Our) behaviour is often referred to as ‘challenging’, but is usually the only means left for us to express our anxiety and emotion, and the distress we are experiencing due to our care environment”

Christine Bryden

Behaviour = Communication

Personwith

Dementia

Environmental Social

 

 

  Physical Individual

Research has shown that patients with dementia in hospital were 50% less likely to receive analgesia than patients without dementia

Morrison R, Siu AL. A comparison of pain and its treatment in advanced dementia and cognitively impaired patients with hip fracture. J Pain Sympt Management 2000; 19:240-8

A recent study has shown that ‘pain was strongly and consistently associated with behavioural and psychological symptoms of dementia, particularly aggression and anxiety’ UCL Behaviour and Pain in the Acute Hospital Project 2013

“Don’t push us into something, because we can’t think or speak fast enough to let you know whether we agree. Try to give us time to respond – to let you know whether we really want to do it. Being forced into things makes us upset or aggressive, even fearful.”

Christine Bryden

Research has shown that the average amount of time that people with dementia in care homes spend interacting with staff or other residents (excluding care tasks) is 2 minutes in every 6 hours.

Alzheimer’s Society ‘Home from Home’ report 2007

Communication is essential…•Life story work

•Music and dance

•Contact with animals

•Massage

•Empathic listening

“I want my mum”

“I can’t stay here – I have to collect my children from school”

“I have to go to work now”

“I want to go home”

THE PROBLEMS WITHTRUTH AND LIES

TELLING THE TRUTH (when it’s not needed)eg: “Your mum’s dead”

POSSIBLE RESULTS:

•Unnecessary distress

•Unmet needs

•Conflict between person with dementia and carers

LYINGeg: “Your mum’s just

popped out”

POSSIBLE RESULTS:

•False expectations leading to distress and further confusion

•Mistrust

•Unmet needs

“I want my mum”

“I want to go home”

“I have to go to work now”

“I want my mum”

“I can’t stay here – I have to collect my children from school”

“I need something to do”

“I need to feel safe”

“I need to be needed”

“I need comfort”

UNDERSTANDING AND MEETING NEEDS

“I want my mum”

Examples: “What would your mum do if she was here?”“You look upset, how can I help?”“It sounds as if you’re having a difficult time…”“I’m so sorry your mum’s not here – is there something I can do for you?”

Possible results:• The person feels cared about and understood• The person feels supported in expressing their feelings and needs • The person gains a sense of relief because their very real emotions have been validated• Carers gain important information about the person’s emotional and/or practical needs and can then work towards meeting these needs

“Dementia robs the person of their identity”

George, who had always been a very smart man, often took off his clothes and exposed himself, even when there were visitors at his house. His wife was very concerned and embarrassed, and felt that George had completely lost his self respect.

Barry often shouted at people as they walked down the corridor in his care home. No-one could understand why. He often appeared anxious and upset.

“Ask not what disease the person has, but rather what person the disease has.” William Osler