dementia, the 21st century epidemic: malta and beyond dr charles scerri phd department of pathology,...
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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’
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
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
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
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)
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)
%
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