Dementia, the 21st century epidemic:

Malta and beyond

Dr Charles Scerri PhD

Department of Pathology,

University of Malta

Old Age Psychiatry Study Morning13th March 2012

Maltese Association of Psychiatric Nurses (MAPN)

Frau Auguste D.

Admitted to Frankfurt hospital: Nov 25, 1901

Symptoms:severe memory impairmentconfusionunpredictable behaviourparanoiahallucinations

Age: 51

Died: April 8, 1906

What is your name?AugusteFamily name?AugusteWhat is your husband's name?I believe ... AugusteHow old are you?Fifty-oneWhere do you live?Oh, you have been to our placeAre you married?Oh, I am so confusedWhere are you right now?Here and everywhere, here and now, you must not think badly of meWhere are you at the moment?This is where I will liveWhere is your bed?Where should it be?

Nov 26, 1901

“Sometimes she greets the doctor as if he were a visitor..…on other occasions she screams that he wants to cut her open..…on others yet she fears him as a threat to her honour as a women..…she seems to have auditory hallucinations. Often she screams for many hours in a horrible voice”. (A. Alzheimer, 1907).

New concept?

‘My sovereign master, old age is here. Senility has descended on me…my spirit is forgetful and I can no longer remember yesterday’

Maxims of Ptah Hoty, 9th Century BC, Egypt

4th Century BC, Hippocrates: Dementia ‘a consequence of ageing’

2nd Century BC, Cicero: ‘The senile folly’

1st Century AD, Celsus: Dementia defined as ‘out of one’s mind’

Mentally insane

Crazy

Mentally deficient

Social rejectionShame, isolation

STIGMA“zmagat”

What is dementia?

“a clinical term referring to a group of brain diseases that result in the progressive deterioration of cognitive functions. These cognitive changes are commonly accompanied by disturbances of mood, behaviour and personality”

DEMENTIA

Different forms of Dementia

Alzheimer’s Disease (~50-70%)

Vascular Dementia (~15%)

Dementia with Lewy Bodies (~10 -15%)

Fronto-temporal Dementia

Dementia secondary to disease

DEMENTIA

Is a major health problem affecting both genders and all socioeconomic groups. In general, there is predominance in women

Affects 2-3% of the elderly population at age 65 years

Incidence doubles every 4 years in reaching 30% at 80 years

Individuals with dementia have shortened life expectancy (average survival is 8 years following diagnosis)

World-wide estimates: 35.6 million in 2009 to 115 million by 2050

DEMENTIA

Major predictor of morbidity and mortality in the elderly

Costs more than cardiovascular disease, cancer and stroke put together

Worldwide costs calculated at $602 billion (ADI,

2010). If dementia was a country it would be the 18th largest economy in the world. In Malta, costs range in between €63-€96m (Wimo, Winblad and Jonsson: Alzheimer’s & Dementia 2010; 6(2), 98-103)

7.3 million people have dementia in EU-member states

Malta GDP – $9.65b (2009), Dementia: 0.65 – 1% of Malta GDP

0

25

50

75

100

France Germany Italy UK

Home care Residential or hospital care

Percentages of individuals with dementia in home care versus residential or hospital care in selected countries (Source: Alzheimer Europe – 1997 data).

Percentage of caregivers spending more than 10 hours every day in caring (Source: Alzheimer Europe).

DEMENTIA – Risk Factors

AGE

World population grew from 3 billion in 1959 to 6 billion in 1999 – doubled in 40 years

Growth will continue more slowly to 9 billion in 2042 – 50% increase in 42 years

17% in the UK15% in Malta 14% in Europe3% in African countries

6% of the world population is aged 65+

Age groups (years)

Per

cent

age

of a

ll de

men

tia t

ypes

(% o

f po

pula

tion)

Age and Prevalence of Dementia

EUROCODE data, Alzheimer Europe (2010)

DEMENTIA – Other Risk Factors

Heart disease, stroke, hypertension, cholesterol, diabetes,

depression

Gender (AD: F>M, VaD: M>F)

Repeated head trauma (dementia pugilistica)

Obesity

Genetics (first degree relative ↑ risk)

Presence of ApoE4 gene

Medical history (Down’s syndrome, HIV infection)

Low levels of mental stimulation, social activity and exercise

DEMENTIA – Diagnosis

There is no single test to determine the presence of dementia

Average time taken for diagnosis after symptoms appear: 20

months

Why? often mistaken as normal ageing

Reason? Lack of awareness

Full physical examination and blood tests

Assessment of memory function: psychological tests (MMSE)

Brain scan to check for anatomical changes in the brain

ALZHEIMER’S DISEASE

First reported by Alois Alzheimer in 1906

Others: Neuronal loss

amyloidplaque

(aggregatedAβ peptides)

neurofibrillarytangle (NFT)

(hyper-phosphorylated

tau protein)

Auguste’s post-mortem : neuropathological lesions

Post-mortem comparison between normal and AD brains. Note the overall shrinkage of the brain in AD

Post-mortem brain slice of patient with severe AD. Note the enlarged volume of the ventricles

AD - Progression

Early stages: loss of short-term memory often leading to repeating information. Confusion, poor judgment, unwillingness to try out new things

Middle stages: Increase in memory loss. Failure to recognise people or confuse them with others. May become angry or aggressive. Wandering. Inappropriate behaviour. May experience hallucinations

Late stages: Total dependence. Loss of memory almost complete. Physically frail. Difficulty in eating. Weight loss. Incontinence. Loss of speech

Intelligence,judgment andbehaviour Memory

Language

Treatment

No cure. Treatment mainly symptomatic

AChEIs – Acetylcholinesterase inhibitors

Increase acetylcholine that is present in low quantities in the brain of AD patients by blocking its degrading enzyme

ACh is a neurotransmitter important in cognitive function First pharmacological treatments to be approved for AD by FDA Delays disease progression donepezil (Donecept®, Aricept®), galantamine (Reminyl®),

rivastigmine (Exelon®) Dose increased to maximum until tolerated.

Treatment

Glutamatergic-system modifiers

Glutamate plays an important role in the pathophysiology of AD Glutamatergic neurotransmission is important in learning and

memory Overstimulation of glutamate receptors by glutamate leads to

calcium overload resulting in neurotoxicity Memantine (Axura®) is a glutamate receptor non-competitive

partial antagonist that blocks glutamate-associated neurotoxicity Therapeutic doses are well tolerated May be more effective if combined with AChEIs

The use of antipsychotic drugs in dementia

‘Antipsychotics for the management of behavioural and psychological symptoms associated with dementia should only be used with extreme caution and only when necessary’

‘Extensive use of these drugs is associated with an increase in mortality’

NICE Guidelines, 2006; UK Department of Health, 2009; BMJ (2012) 344:e977 doi: 10.1136/bmj.e977 (Published 23 February 2012)

A progressive increase in the elderly population

28%

The situation in Malta

Decrease in old-age dependency ratio

Malta Medical Journal, 19(2), 2007

Malta Medical Journal, 19(2), 2007

Increase in the number of PWD by 2050

Dementia cases in Europe

(Alzheimer Europe, 2009)

Malta1.11%

Malta Dementia Strategy Group

Launch: May 2009

Objective: Develop a series of

recommendations on a strategic

plan to enhance dementia care in

Malta

Tasks: Current situation,

consultation process, final

recommendations

Report completed and presented in January 2010

Current Situation Analysis

Results

1. Lack of awareness

General Public

Healthcare professionals

Awareness will improve early diagnosis and reduce stigma

A 5 year delay in the onset of AD will decrease AD prevalence by 50%

2. Lack of psychological support to carers and PWD

Approx. 60-90% of carers suffer from depression/breakdown/anxiety/guilt feelings

‘I feel obliged. I feel so guilty. I can’t get away from that.It’s terrible. I can’t even live my own life...I really wish I couldrun away but I can’t. I can’t even leave. She has trapped mereally’

Daughter of a PWD

3. Lack of financial support

Most carers have to stop working with disease progression (mostdementia patients are cared at home)

‘the problem about the pills is that they are too much expensive..I take the lowest part of my pension you know..’ Husband of a PWD

No reimbursement for anti-dementia drugs

‘about a third of my pension goes to the chemist you know..If I have a little bit of interest from the bank, because I had some money in the bank, I spend all the interest on medicine’ Wife of a PWD

4. Lack of infrastructure

No dementia homes

Most elderly homes are not dementia-friendly

5. Lack of research in dementia care

Healthcare students will be less prepared for the future

Fragmentation in academic preparation

6. Absence of community services

PWD and carers are left to fend on their own

Recommendations

Improving awareness on dementia in the community and in relevant professional and non-professional fields

Improving early diagnosis and intervention

Providing good quality information at the point of diagnosis and beyond

Financial support for anti-dementia medication

Increase knowledge of services that are already available for individuals with dementia and their carers

Improve the quality of service in acute and long-term care

Improving support services for individuals with dementia and their carers within the community

Improving end-of-life support services for individuals with dementia and their cares

June 2010 – Half-day SeminarNursing profession in Malta

Topic – Dementia care, management and policy

Methodology – 20-point questionnaire (Likert scale) distributed and collected prior to commencement of the seminar

Response: n=196 (81% response rate)

♂

79.6%

20.4%

♀

Gender distribution Age bracket (years)

%

%

Place of work

%

Dementia is still ataboo subject

SA: Strongly AgreeA: AgreeNA/ND: Neither Agree nor DisagreeD: DisagreeSD: Strongly Disagree

%

IWD aremarginalised

%

I have enoughknowledge/training

to care for IWD

SA: Strongly AgreeA: AgreeNA/ND: Neither Agree nor DisagreeD: DisagreeSD: Strongly Disagree

%

Working with IWDis very challenging

%

There are enoughservices for IWDand their carers

SA: Strongly AgreeA: AgreeNA/ND: Neither Agree nor DisagreeD: DisagreeSD: Strongly Disagree

%

IWD behave verymuch like children

Working with IWD isvery challenging

IWD behave verymuch like children

Nurses caring for a relative with dementia (n=41)vs

Nurses not caring for a relative with dementia (n=152)

SA......NA/ND......SD1 3 5

↓ value → ↑ agreement

p<0.05

p<0.05

Because of their conditionIWD don’t feel pain

Nurses caring for a relative with dementia (n=41)vs

Nurses not caring for a relative with dementia (n=152)

SA......NA/ND......SD1 3 5

↓ value → ↑ agreement

p<0.01

I have enough knowledge/training to take care of IWD

Nurses working with IWD (n=114)vs

Nurses not working with IWD (n=81)

SA......NA/ND......SD1 3 5

↓ value → ↑ agreement

p<0.001

Conclusions

• Nursing professionals consider IWD to be marginalised and that services intended for these individuals and their carers are lacking

• There is not enough knowledge and training in dementia and that working with these individuals is considerably challenging

• A significant number of nursing professionals agreed that IWD behave like children

• Important differences were reported based on whether nursing professionals have a relative with dementia or work with an IWD

• These results show important deficiencies in the nursing profession with respect to various aspects of dementia care and management

Summary - Major Challenges

Lack of awareness (public and healthcare professionals)

Lack of training in various aspects of dementia care and management

(disease model versus patient-centred care model)

Lack of coordination among the various players

Lack of information about the support that is available to IWD

Lack of services

Lack of research

Lack of a holistic national plan

‘Real generosity is doing

something nice for

someone who will never

find out’