Dementia Dr Maryam

You can’t see that our brain is diseased, so that we are having difficulties functioning

DEMENTIA by Dr Mariam Ashraf Roll # 17 October 2009 HSA-Islamabad

Dementia A progressive and largely irreversible syndrome , usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment. WHO, ICD 10 version

At a personal level . . . • One man describes dementia as

“the feeling of having been betrayed by his brain, ‘which somehow short-circuited on him’.” (Zgola, 1987, pg 1)

AETIOLOGY contd..

VD AD 50-70%

Others

RISK FACTORS • Gender Male/female • • • • •

Age 60-70 years Prior stroke Hypertension Cardiovascular disease Diabetes

•High cholesterol •Smoking •Race •Family history CADASIL-cerebral autosomal dominant arteriopathy with sub cortical infarcts and leukoencephalopathy

Ten early symptoms of dementia 1. Memory loss 2. Difficulty performing familiar tasks 3. Problems with language 4. Disorientation in time and place 5. Poor or decreased judgement 6. Problems with keeping track of things 7. Misplacing things 8. Changes in mood or behaviour 9. Change in personality 10. Loss of initiative

Burden of disease (BoD) • Burden of disease = loss of wellbeing, measured in disability adjusted life years (DALYs) • Dementia is among the most disabling of all chronic diseases. World Health Organization (WHO) data shows in Asia Pacific: – Neuropsychiatric conditions are second only in disability burden to infectious and parasitic diseases. – Disease burden of dementia exceeds that of malaria, tetanus, breast cancer, drug abuse or war. – Disease burden from dementia is projected to increase by over 76% over the next 25 years.

Dementia

Why a Public Health Problem? • Currently 30 million people with dementia in the world • 4.6 million new cases annually • One new case every 7 second • The number of older people in developing countries will have increased by 200 % as compared to 68% in developed countries in 30 years up to 2020

Alzheimer’s disease International, December 2008, The Prevalence of Dementia world wide.

PREVALANCE OF DEMENTIA ACCORDING TO AGE 18

16.4

16 14

percent

12 10

8.7

8 4.9

6 4 2

1.6

0.9

2.8

0 60-64

65-69

70-74

75-79

Age in ye a rs Global burden of disease 2000 Global burden of disease 2000

80-84

85 +

The growth of numbers of people with dementia in high income countries and low and middle income countries

Alzheimer’s disease International, December 2008, The Prevalence of Dementia world wide.

In South East Asia • • • •

Pakistan 330.1 cases per year India 3248.5 cases/ year Sri lanka 89 cases/ year China 5541.2 cases / year

A study to estimate prevalence of dementia in Asia, access economics September 2006

ALZHEIMER’S DISEASE INTERNATIONAL is the umbrella organization of national Alzheimer's association worldwide

A few facts about ADI • Founded in 1984 in the US • Secretariat in London • Currently 66 national members • One member per country • Officially affiliated to WHO

PAKISTAN • Is a low income group country • One of the major health problems of this country is mental illness

Mental health resources • • • •

National mental health programme 1986 Mental health policy 1997 Mental health legislation 2001 Mental health financing 0.4 % of total health budget on mental health • No. of psychiatrists/ 100,000 population =0.2 • No. of neurologists /100,000 population = 0.14 • No. of psychologists / 100,000 population = 0.2

Mental health Atlas, 2005, WHO

• Information gathering system- none for mental health reporting system – has been initiated in NHMIS

• Alzheimer's Pakistan is the National Organization of Alzheimer's and related dementias. The main objective of this Non Government organization is to work towards the welfare of people suffering from dementia and their care givers

WHY DEMENTIA IS IMPORTANT FOR PAKISTAN ?

Pakistan population pyramid for the year 2010 Predicted age and sex distribution

Pakistan population pyramid for the year 2050 Predicted age and sex distribution

Challenges - summary • Limited awareness of dementia a cultural context that denies its existence or attaches stigma to the condition. • An assumption that dementia is a natural part of ageing and not a result of disease. • Inadequate human and financial resources to meet care needs and limited policy on dementia care. • High rates of institutionalisation in cities and lack of facilities in other regions. • Inadequate training for professional care givers and a lack of support for family care givers.

PROGNOSIS • Poor at present: – Most patients suffer progression of the disease manifested first by increased dependence on caregivers, and latter by loss of capacity to perform basic activities of daily living. – Patients with advanced dementia will suffer incontinence, motor abnormalities and finally death.

Let’s stop denying and do something about it! • Then what do we do about it? – Doctors, governments, professionals, families all need to change – but how?

WHAT CAN BE DONE ? • We don’t need high tech, or huge amounts of money, or a parallel system • Instead we need integration, integration, integration and to implement basic steps

WHAT CAN BE DONE ?

• Dementia

BCC

Prevention

Reduction of dementia associated disability •Early detection

Rehabilitation

•Do not smoke •Regular physical exams •Continue learning •Regular Exercise •Have fun and relax •Cardiovascular care

•Education •Awareness •Mitigating risk factors associated with dementia •Be financially stable •Be spiritual •Eat less and include antioxidants •Maintain family and friendship networks •Do not retire from life: have a role/purpose

Possible interventions Early detection

Rehabilitation

•Identify potentially reversible illnesses that manifest as symptoms of dementia. •Enable the primary care physician to diagnose and optimize treatment plans •Learn and monitor for signs, symptoms, and behavioral triggers of dementia.

•10 warning signs of Dementia

Comprehensive model for care

Montessori-based Dementia programming

Mc Master university Canada 2008

MBDP… adapted • Focusing on strengths and abilities, what the person can continue to DO – not the just losses that are part of the dementia • Promoting engagement in long life activities and interests using retained abilities

MONTESSORI-BASED PROGRAMMING ADAPTED FOR DEMENTIA •This method of intervention focuses on rehabilitation, where rehabilitation is defined not as a return to a premorbid state, but as a set of methods and procedures that enable individuals to circumvent existing deficits to achieve higher levels of functioning. •In the Montessori-based context, the resident is engaged in more meaningful activity. •Activities are matched with interests, strengths, needs and abilities.

Excess Disability Actual disability is the disability associated with the disease. Excess disability is not a result of the disease. It arises from the disuse of remaining abilities.

IN OTHER WORDS • The person gets better with practice •

EVEN IF THE PERSON DOES NOT REMEMBER HAVING LEARNED THE INFORMATION/TASK/ BEHAVIOUR

Montessori-based Activities • • • • • • • •

Scooping exercises Pouring exercises Squeezing activities Fine motor activities Care of the environment Care of the person Matching activities Seriation activities

Decisions Made based On: Needs Interests Strengths Abilities

Motor activities • Montessori-based programming for dementia could focus on physical activities, that are aimed at maintaining (and perhaps restoring) physical function. Consider: • Scooping exercises, pouring exercises, squeezing exercises and fine motor activities

SCOOPING ACTIVITIES

MBPD: Care of the environment

Cognitive

Animal / Plant Sort

Group or social activities • Montessori Reading books available with appropriate sized print and group discussion questions

• We can use Montessori for Dementia programming with persons in all stages of dementia.

Where can you use these techniques?

• Anywhere! Day Programs

At Home Hospitals

Who Can Use These Techniques? • Anyone who has been trained! Professionals

Family

Volunteers

Evaluation of Care Monitor progress in concrete terms. • • • • • • •

Number of hours of sleep Weight Food intake Incidents (falls) Number of stress-related events (hitting, yelling) Sedative and tranquilizer use Family's expression of satisfaction with the care

The ULTIMATE GOAL is prevention of excess disability among patients through rehabilitation

OUTCOME – Problematic behavior is rarely seen since being engaged and displaying problematic behaviors generally are two mutually exclusive categories of behavior

Why Rehabilitation In 1906, Dr Alois Alzheimer, a famous German pathologist, described a patient who had died of an unusual mental illness.

A woman, 56 years old, showed unreasonable jealousy towards her husband as the first noticeable sign of the disease. Soon a rapidly increasing loss of memory could be noticed. She could not find her way around in her own apartment. She carried objects back and forth and hid them. At times she would begin shrieking loudly. Her ability to remember was severely disturbed. If one pointed to objects…..... Sometimes, one noticed her getting stuck.. She seemed no longer to understand the use of some objects. The generalized dementia progressed however. Towards the end, the patient was completely stuporous; she lay in bed with her legs drawn up under her, and in spite of all precautions she acquired bedsores. After 4-1/2 years of suffering, death occurred.

IN OUR SOCIETY THERE ARE NUMBER OF PEOPLE WHO EXPERIENCE SAME KIND OF DISABILITY…. BUT INSTEAD OF HELPING THEM OUT WE SIMPLY CLOSE OUR EYES…..LEAVING THEM TO GOD AND THANKING THAT WE DON’T HAVE SUCH PROBLEM…. BUT IN REALITY IF WE DON’T DO ANYTHING ABOUT IT NOW ….U NEVER KNOW … WE CAN SUFFER FROM THIS IN FUTURE

FUTURE ASPECTS • Create a climate for change thru’ greater awareness • Build effective constituencies and coalitions for partnership. • Promote development of responsive primary and community care services. • Provide information on lifestyles that may reduce dementia risk. • Make provision for special needs, including for younger people and people with behavioural and psychological symptoms. • Promote investment in research for cause, prevention and quality dementia care.