dementia – the growing threats and...

CHAPTER FIVE

DEMENTIA – THE GROWING THREATS AND CHALLENGES

5.0.0 INTRODUCTION

The theme for the 2011 world Alzheimer’s Day (September 21,

2011) is “Faces of Dementia” (Alzheimer’s Research Group, 2011).1

Dementia is one of the major causes of disability in old age.

Of all the geriatric misfortunes, the most formidable, even

insurmountable adversity is the arch villain, notorious in the name

of dementia. Therefore, there is a dire need to make a thorough

probe into the nature of this malady to bring affordable relief to its

victims and all those who are affected thereby. The word dementia

is derived from two Latin words - de meaning ‘apart’ and mentis

meaning ‘mind’ (Medical News Today, 2009).2 Dementia is the

progressive deterioration in cognitive function, the ability to process

thought. Progressive means that the symptoms will gradually get

worse. The deterioration is more than what might be expected from

normal ageing and is due to damage. The main symptoms are

memory loss, moodiness and communicative difficulties (ICD-10).3

The role of family care-givers has also become more

prominent, as care in the familiar surroundings of home may delay

the onset of some symptoms and postpone or eliminate the need for

1 Alzheimer’s Research Group, (2011)

2 Medical News Today, Neuro-Science: 13 March, 2009

3 The ICD -10 classification of mental and behavioural disorders: clinical

description and diagnostic guidelines–WHO 1992, “Organic including

symptoms, mental disorders, 45-46.

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more professional and costly levels of care. Home-based care may

entail tremendous economic, emotional, and even psychological

costs as well. Family care-givers often give up time from work and

forego pay in order to spend an average of 47 hours per week with

an affected loved one, who frequently cannot be left alone. In a

survey of patients with long term care insurance, the direct and

indirect costs of caring for an Alzheimer's disease patient averaged

$77,500 per year in the United States (Cooper, 2007).4 Care-givers

are themselves subject to increased incidence of depression,

anxiety, and, in some cases, physical health issues (Adams, 2008).5

We show care staff how to capture information effectively

about an individual’s past. Family and friends may need

encouragement to provide details about an individual’s likes and

dislikes, what makes them tense, and what the person is likely to

view positively and negatively. We do need family and friends to

‘buy into’ the way in which we work. Family members may feel they

do not have much time available to help us and rather hope that we

will just get on with looking after the individual and not bother

them. They are gently shown that a little investment in time – to

help build up a picture of the person being cared for – will be hugely

beneficial all round. Family members also have to understand that

there are limitations to what can be done and that there is no cure

for dementia (Zoe Elkins, 2011).6

4 Cooper, C. Balamurali, T.B. and Livingston, G. (April 2007). "A systematic

review of the prevalence and covariates of anxiety in caregivers of people with

dementia”. International Psycho geriatrics 19 (2): 175–195.

5 Adams, K.B. (June 2008) "Specific effects of caring for a spouse with

dementia: differences in depressive symptoms between caregiver and non-

caregiver spouses". Journal of International.

6 Zoe Elkins, (2011) “Why we are at home with the SPECIAL method? Journal

of Dementia Care – July/August 2011

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5.1.0 Nature and Causes of Dementia

Dr. Philippe Pinel (1745-1826), the founder of modern

psychiatry, who the first to use the word ‘dementia’ in 1797. It is a

loss of the multiple components of intellectual function. In 1976,

Neurologist Robert Katzmann perceived a link between ‘Senile

dementia’ and Alzheimer’s disease. Alzheimer’s disease implies the

premature death of the brain cells. Stroke (vascular dementia)

indicates problem with blood vessels, veins and arteries. Our brain

needs an uninterrupted supply of plenty-oxygen-rich-blood. If this

supply is obstructed in any way, our brain cells will die and lead to

vascular dementia. Brain cells are nerve cells, which form part of

the nervous system. The patient’s memory, concentration and

ability to speak are affected. In Fronto-temporal dementia, the front

part of the brain is damaged. The patient’s behavior and personality

are affected first, later his memory is impaired.

Dementia is a syndrome that develops from the disease of the

brain, usually of chronic or progressive nature which causes

serious disturbance of multiple higher cortical functions. It is

manifested in a progressive, deterioration in intellect and affects all

the potentialities including memory, learning, orientation,

comprehension and judgement. Older people are more vulnerable to

this ailment; about 2% of cases start before the age of 65 years.

After this, the rate of prevalence doubles every five years. Dementia

interferes with all personal activities of daily living such as washing,

dressing, eating, personal hygiene and toilet needs (ICD-10).7

Dementia is caused by changes in the brain and produces

myriad symptoms. Its causes are many and some can be easily

7 The ICD -10 classification of mental and behavioural disorders: clinical

description and diagnostic guidelines –WHO 1992, “Organic including

symptoms, mental disorders, 45-46.

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eliminated. As against the popular notion, dementia can be seen in

the young. The most common causes of dementia in the elderly are

Alzheimer's disease and vascular dementia. These two conditions

cannot be reversed. Some symptoms, especially those seen in

children like stammering and spluttering may be mistaken for

dementia. The main symptoms of dementia are confused thoughts,

forgetfulness, getting lost in familiar places, and becoming

disoriented about people, places and time. Neglecting personal

appearance, safety, nutrition and hygiene are also symptoms. The

nutritional causes in most cases of dementia in younger people can

be treated and reversed. Poor nutrition, vitamin deficiency, high

fever, dehydration or an adverse reaction to medication can also

lead to dementia. A severe blow on the head or a head injury can

cause dementia in young adults. Those who play contact sports or

engage in an activity that might cause an injury to the head (biking,

skateboarding, and diving) should be extremely careful and wear a

helmet or take other precautions to prevent an injury.

Figure 5.1 Causes of Dementia

Depression, feeling of loneliness and despair might cause

dementia in the young. The death of a parent, friend, relative or pet

might cause anxiety and confusion, which can result in dementia.

The use of drugs and alcohol can both cause dementias in young

adults. Drugs and alcohol kill brain cells. Abusing one or both can

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cause symptoms and problems that include dementia (Dementia

Research Group, 2010).8

One can reasonably suspect dementia when one or more of

the following symptoms are manifested:

• Increasing forgetfulness

• Not being able to learn new information or follow directions

• Repeating the same story over and over, and asking the same

questions many times

• Difficulty in finding the right words or in completing a

sentence

• Jumbling words and phrases which do not make sense

• Losing or hiding possessions or blaming others for stealing

things

• Confusion about the time of day, where they are or who other

people are

• Fear, nervousness, sadness, anger and depression

• Crying a lot

• Forgetting how to do everyday things like cook a meal, drive a

car or take a bath.

The dementia syndrome is linked to a very large number of

underlying causes and diseases in the brain. The common types,

accounting for 90% of all cases are Alzheimer’s disease, vascular

dementia. Dementia with Lewy bodies and Fronto-temporal dementia.

The characteristic symptoms and neuro-pathological findings are

summarized in Table 5.1.

8 Dementia research group, 2000.

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Some less common causes of dementia such as chronic

infections, brain tumours, hypothyroidism, subdural haemorrhage,

normal pressure hydrocephalus, metabolic conditions, and toxins

or deficiencies of vitamin B12 and folic acid should be particularly

seriously viewed since some of these conditions set right at least

partially by timely medical or surgical intervention. Symptomatic

treatments can certainly delay the relentless course of the disease

and ameliorate the suffering causes by it. The fact is that timely

support can help People with Dementia (PwD) and carer’s alike

(Dementia report of India, 2010).9

Table 5.1 Common subtypes of degenerative dementia

Source: Dementia Report of India, 2010

9 Dementia Report of India, 2010.

Early characteristic

dementia Neuropathology

Proportion of

symptoms case

Alzheimer’s disease

Impaired memory, apathy and depression Gradual onset (AD)

Cortical amyloid plaques and neuro-fibrillary tangles

50-75%

Vascular dementia

Similar to AD, but memory less affected, and mood fluctuations more prominent Physical frailty Stepwise progression (VAD)

Cerebro-vascular disease Single infracts in critical regions, or more diffuse multi-infarct disease

20-30%

Dementia with Lewy Bodies (DLB)

Marked fluctuation in cognitive ability Visual hallucinations Parkinsonism (tremor and rigidity)

Cortical Lewy bodies (alpha-synuclein)

<5%

Frontotemporal dementia (FTD)

Personality changes Mood changes Disinhibition language difficulties

No single pathology -damage limited to frontal and temporal lobes

5-10%

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The crucial problem is that the borders between these

different subtypes are by no means distinct. Clinico-pathological

correlation studies have tried to co-relate the diagnosis made in life,

and the pathology evident in the brain post-mortem. These studies

have revealed that mixed pathologies are much more common than

‘pure’ and this is particularly true in Alzheimer’s disease (AD) and

vascular dementia, AD and dementia with Lewy bodies (DLB). An

elaborate study of over 1000 post-mortems revealed that, while 86%

of all those with dementia had AD related pathology, only 43% had

pure AD. 26% had mixed AD and cerebrovascular pathology and

10% had AD with cortical Lewy bodies.10

5.1.1 Etiology (Risk factors)

Understanding risk factors: It is very important to understand

the risk factors for dementia before planning interventions. Risk

factors can be divided into potentially modifiable and non-

modifiable risk factors. In addition, various protective mechanisms

have become known. Understanding the potentially modifiable risk

factors would help in selecting the management strategies.

Understanding the non-modifiable risk factors would help in

identifying high-risk groups and planning targeted interventions.

The main risk factor for most forms of dementia is advancing

age, with prevalence roughly doubling every five years over the age

of 65 yrs. Onset before this age is very unusual and, in the case of

AD often suggests a genetic cause. Single gene mutations at one of

three loci (Beta amyloid precursor protein, presenilin1 and

presenilin 2) account for most of these cases. For late-onset AD

both environmental (lifestyle).


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Table 5.2 Risk Factors of dementia

Non modifiable factors

• Age

• Family history

• ApoE4 allele

• Female sex

• Depression

• Head trauma

• Mutation on 1,14,21 chromosome

• Down’s syndrome

• Diet

Potentially Modifiable factors

• Vascular Disease

• Hypertension

• Diabetes

• Dyslipodaemia

• Nutritional deficiency (Vitamin B)

• Smoking

• Alcohol

• Obesity

Sources: Dementia report of India-2010

A common genetic polymorphism, the apolipoprotein E (apoE)

gene e4 allele greatly the increases the risk of developing dementia; up

to 25% of the population has one or two copies (Saunders et al, 1993

and Nalbantoglu et al, 1994).11 However, it is not uncommon for one

of the identical twins to suffer from dementia, and the other not. This

implies a strong influence of the environment. Evidence from cross-

sectional and case-control studies suggests associations between AD

and limited education, and head injury (Mortimer et al, 1991; Mayeux

et al, 1995) which, however, are only partly supported by longitudinal

(follow-up) studies. Depression identified as a risk factor in short term

longitudinal studies, may be an early presenting symptom, rather

than a cause of dementia.13 Elderly individuals with genetic

vulnerability and family history of dementia in first-degree relatives

11 Saunders, A.M. Strittmatter, W. J. Schmechel, D. St.George-Hyslop PH,

Pericak-Vance, M.A. and Joo SH et al. (1993) Association of apolipoprotein

E allele e4 with late-onset familial and sporadic Alzheimer's disease.

Neurology, 43:1467-72.

209

(especially of the early onset type) are high-risk groups for dementia.

In addition, people who have had chronic depression in their earlier

life and head injuries are known to be at higher risk and so should be

watched for memory problems in later life.

5.2.0 The Types of Dementia are as follows:

� Dementia of Alzheimer type

� Vascular dementia

� Dementia due to Lewy body disease

� Alcohol related dementia

� Dementias seen with other conditions like Parkinson’s

disease, Huntingdon’s disease, or due to Vitamin B12

deficiency or infection causing dementias like

Creutzfeld Jacob disease.

5.2.1 Alzheimer’s Disease

Alzheimer disease was first described in 1907 by Alois

Alzheimer. From its original status as a rare disease, Alzheimer

disease has become one of the most common diseases in the aging

population, ranking as the fourth most common cause of death.

Alzheimer disease is a progressive neurodegenerative disorder

characterized by the gradual onset of dementia. The pathologic

hallmarks of the disease are beta-amyloid (Aß) plaques,

neurofibrillary tangles (NFTs), and reactive gliosis.

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Figure. 5. 2 Alzheimer’s disease spreads through linked nerve cells, brain imaging studies.

Alzheimer’s disease and other forms of dementia may spread

within nerve networks in the brain by moving directly between

connected neurons, instead of in other ways proposed by scientists,

such as by propagating in all directions, according to researchers

who report the finding in the March 22 edition of the

Journal Neuron (William Seeley, 2012).12

Figure 5.3 Moderate Alzheimer’s Disease

12 William Seeley, M.D. (2012) UCSF Memory and Aging Center,

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Coronal, T1-weighted magnetic resonance imaging (MRI)

scans in a patient with moderate Alzheimer disease. Brain image

reveals hippocampus atrophy, especially on the right side.

Figure 5.4 Atrophic Changes in the Temporal Lobes

Axial, T2-weighted magnetic resonance imaging (MRI) scan of

the brain reveals atrophic changes in the temporal lobes.

It was in 1906 that Dr. Alois Alzheimer first described the

bizarre presentation of a 51-year-old Auguste De as a different

disease process, which was later named after him. Alzheimer’s

disease is the most common cause of dementia and is a

neurological condition affecting the elderly above the age of 65

years. The disease causes difficulties in remembering and un-

derstanding facts, thinking and making decisions. Even though the

actual cause of Alzheimer’s is not known, two abnormal microscopic

structures called ‘tangles’ and ‘plaques’ are said to be found in

greater concentration in the brains of AD patients than of the

normal elderly. Alzheimer’s disease is generally referred to as a

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progressive degenerative and irreversible form of dementia.

(Dementia report of India, 2010)13

AD is characterized clinically by slow progressive decline in

functions pathologically caused by the presence of too many senile

plaques and neurofibrillarv tangles in certain brain regions. AD is a

progressive, degenerative disease that causes decline in many areas

of intellectual abilities accompanied by physical decline. In the early

stages only memory is noticeably impaired. The patient may have

difficulty in learning new skills or tasks that require abstract

reasoning or calculation. In the later stages, impairment in both

language and motor abilities is seen. AD usually leads to death in

about 7 to 10 years, but can progress more quickly or slowly.

5.2.2 Vascular Dementia

Vascular dementia is related to various cerebrovascular

disorders and different types of ischemic lesions in the brain, the

most common forms of this being Multi-infarct Dementia (MID). The

intensity of impairment in this type of dementia depends on the

part of the brain that is affected by the stroke (Dementia report of

India, 2010).14

5.2.3 Dementia due to Lewy Body Disease

The characteristic features of dementia developing from Lewy

body disease are fluctuations of awareness from day-to-day and

signs of Parkinsonism such as, tremors and rigidity. This type of

dementia produces pathological signs similar those of Parkinson’s

disease and both arc manifested in progressive cognitive decline



14 Dementia research group,2000.

15 Dementia research group,2000.

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5.3.0 Prevalence of Dementia by Age and Gender

In the year 2010, an estimated 3.7 million Indian people aged

over 60 were victims of dementia (2.1 million women and 1.5 million

men). The incidence of dementia increased steadily with age and

higher rate prevalence was seen among older women than men

(figure 5, 4). These estimates are higher than those previously

estimated by Delphi consensus.

Figure 5.5: Projected changes between 2006 and 2026 in number of people living with Dementia

Source: Dementia report of India, 2010

Approximately 8-10% of people over the age of 65 years in the

world have dementia. The prevalence rises from around 2% of those

aged 65 to more than 35% of those over 85 years. This represents,

roughly, a doubling in prevalence for every five-year increase in age.

A more positive thought is that around two-thirds of the very old do

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not have dementia. The number of people worldwide with dementia

is predicted to double every 20 years (Henry Woodford, 2007).16

5.3.1 Prevalence of Dementia in India, 2010

The dementing illness is the most feared and devastating

disorders of late life. Current estimates reveal that there are about 18

million cases of dementia in the world and by 2025, there will be about

34 million suffering from dementia ranges from 5% to 7%. Alzheimer’s

disease is the most common dementing disorder accounting for 60% of

all cases of dementia (Dementia research group, 2000).17

Compared to industrialized nations, developing countries like

India have not been able to report reliable prevalence data on

ageing related disorder such as dementia primary because of lesser

attention paid to health and older adults and of lesser resources for

Health Research (Chandra, et el, 1998).19 studies provide different

figures in separate parts of India, most of which are limited by small

numbers and the inferable quality of the instruments employed. A

study on urban madras sample reported a prevalence of a 2.7 %

(Rajkumar and Kumar, 1996).18 In two studies on rural samples

conducted in southern states of Tamil Nadu (Rajkumar, et al. 1997)

21 and Kerala (Shaji, et el. 1996)19 the incidence for dementia was

reported to be 3.5% and 3.4% respectively in the population, aged of

60 and above. In an indo- us study of prevalence of dementia

16 Henry Woodford, (2007) Essential geriatrics. Radcliffe Publishing Oxford,

New York. p.1.

17 Dementia research group, 2000.

18 Rajkumar, S. Kumar, S. and Thara, R. (1997) Prevalence of dementia in a

rural setting: A report from India. International Journal of Geriatric

Psychiatry, 12(7), 702-707. Rajan, S. Kumar, S. and Thara, R. (1997)

Prevalence of dementia in a rural setting: A report from India. International

Journal of Geriatric Psychiatry, 12(7), 702-707.

19 Shaji.S, Promodu, Abraham, T.Roy, K.J.Varghese A[1996].An Epidemiological

Study of Dementia in Rural Community in Kerala . Indian-British Journal of

Psychiatry 168,745-749

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among the elderly population aged more than 55 years in a rural

population Ballabgarh, in northern India (Chandra, et el. 1998)

found a higher prevalence compared to western studies and shorter

survival with the disease.20 The community’s expectations of the

elderly were low and many potentially treatable disabilities

including memory loss were ignored as part of normal ageing.

The reason for a larger proportion of the older women than

men having dementia may be women live longer in India. However,

studies of age-specific incidence of dementia among older people

show no significant difference between women and men. It may,

therefore, lead to the occlusion that gender is not a risk factor for

AD or other dementia among older people.

Persons with dementia in younger age groups, 60-75 years,

are expected to increase steadily over time; and a steep increment

amongst age groups over 75 years can be predicted after 2030.21

20 Chandra, V., Ganguli, M., Pandav, R., Johnston J., Belle S., DeKosky S.T.,

(1998) Prevalence of Alzheimer's disease and other dementias in rural India:

The Indo-US study-Neurology, 51(4), 1000-1008

21 Dementia Report of India, 2010

216

Figure 5.6 Trends in Dementia Prevalence by Age Overtime (2010-2050)


Figure 5.7: Estimation of number of PwD over 60 years in India between 2000 and 2050


The future projections are estimated on the assumption that

prevalence of dementia is stable over time, which may not be true. If

217

the incidence of dementia is likely to increase with the increase in

life expectancy. In other words, as the number of older people

increases, the prevalence of dementia will also increase (Dementia

report of India, 2010).22

5.4.0 Symptoms of Dementia

The early symptoms of dementia are often ignored and often

pass for the inevitable effects of the ageing process. The onset of the

disease is gradual and difficult to recognize. Having problems in

talking, (language problems) memory loss, particularly of recent

events, difficulty in making decisions, becoming inactive and

unmotivated, showing mood changes, depression or anxiety,

reacting angrily or aggressively and losing of interest in hobbies and

activities are indicative of the onset of dementia. In the middle

stage, as the disease progresses, limitations become pronounced

and noticeable and the returns become entirely dependent on their

family and carers. Other behaviour problems include repeated

questioning and calling out, clinging and disturbed sleep, unable to

recognize even familiar faces and places. In the Later Stage, occurs

absolute dependence on others for anything and everything


Diagnosis

● AMTS (Abbreviated Mental Test Score)

● MMSE (Mini Mental State Examination)

● CASI (Cognitive Abilities Screening Instrument)

A specialist, such as Psychiatrist, Neurologist, Neuro

psychologist or Gero-psychologist, carries this out.

22 Dementia Report of India, 2010

218

5.5.0 Problems of Dementia

It is estimated that there are 4 million people in India affected

with dementia and the number will increase in due course. The

available data show that by 2020 India will be the most afflicted

country in the world with the highest incidents of dementia. Some

of the important features of problem of dementia in India are the

following:

� Dementia sufferers permanently lose their capacity to live

independently and over the years personal care skills will

be lost. At that point they require continuous and

constant help and attention from care-givers.

� In the early stage, dementia is often misunderstood by

other family members, leading them to take a hostile

attitude and this exacerbates the distress of dementia and

causes severe interpersonal strain in the family.

� The demented elderly are often ridiculed publicly.

� In urban settings the husband and wife may be both

employed, hence they do not have any other option than

locking the demented one inside the house.

� Lack of proper awareness of the nature and requirements

of the disease.

� Lack of sufficient trained personnel for providing good

care.

� The joint families have given way to nuclear families.

‘Joint families’ villages are being deserted of with the

younger generation shifting to cities and the elderly are

forced to migrate with them to be shut behind closed

doors. Instances are many where the young ones go

abroad, while the aged are left behind.

� India does not have an adequate number of institutions to

look after the aged and demented.

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� Day care centers and old age homes are nearly non-

existent and geriatric clinics do not function in most of

the hospitals.

� Women, the traditional care-givers of the elderly demented

are increasingly shifting to other jobs.

� The highly educated women folk have been encouraged to

develop aspirations beyond the daily family routine works

and are reluctant to the monotonous caring of a

demented-in-law.

5.6.0 Impact of Dementia

5.6.1 Management of Dementia

The standard treatment goals of dementia management

include; an acceptance that this ailment is beyond large, incurable.

There are no medications that are clinically proven preventative or

curative of dementia. Cognitive behavioural therapy and music

therapy can help patients with dementia to an extent. It is

important to remember that the patient’s caregiver also needs

training and emotional support.

� Early diagnosis.

� Optimization of physical health, cognition, activity and

well-being.

� Detection and treatment of behavioral and psychological

symptoms of dementia.

� Educating the carer and providing long-term support to

the carer.

� Dementia is characterized by a loss of or decline in

memory and other cognitive abilities. It is caused by

various diseases and conditions that result in damage to

the brain cells.26

To diagnose someone with dementia, the following criteria are

widely used:

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A decline in memory and in at least one of the following

cognitive abilities is a definite symptom of dementia.

� Ability to generate coherent speech or understand spoken

or written language.

� Ability to recognize or identify objects, assuming intact

sensory function.

� Ability to execute motor activities, assuming intact motor

abilities, sensory function and comprehension of the

required task.

� Ability to think abstractly, makes sound judgments,

plans, and carries out complex tasks.

Prevention of Dementia

A prevention method for dementia is not known for either

irreversible dementia or even reversible dementia. There are small

things you can do in life that may prevent certain types. Habits that

maintain a healthy lifestyle such as eating a low-fat diet, avoiding

smoking, moderating use of alcohol, controlling high blood pressure

and diabetes, and exercising regularly will all contribute to

preventing dementia, particularly vascular dementia. Taking

safeguards to prevent infections and using protective equipment for

vehicles to prevent head injuries are others. To allow early

treatment and reversal of dementia, the individual will have to be

alert for the symptoms and signs of dementia and recognize early

any underlying medical conditions.

The standard treatment goals of dementia management

include:

The PwD need to be treated at all times with patience and

should be respected for their dignity and personhood. The carers

need unconditional support and understanding; their needs should

also be determined and attended to. Carers need to be educated in

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the causes and symptoms of dementia, and in the nature of the

problems. They can also be trained to appropriately manage most of

the common behavioural problems in such a way that the frequency

of symptoms or the strain experienced by the carer is reduced. The

PwD and the family carers need to be supported over the prolonged

period of care. Partially effective treatments are available for most of

the problems connected with dementia. The treatments are

symptomatic, that is, they reduce a particular symptom, but do not

alter the progressive course of the disease. Psychological and

psychosocial interventions (sometimes referred to as ‘non-

pharmacological’ interventions) may be as effective as drugs, but

have been less extensively researched, and much less effectively

promoted.

Cholinesterase Inhibitors, such as donepezil, rivastigmine

and galantamine have been found to reduce the cognitive,

behavioural and ADL symptoms in both Alzheimer’s and vascular

dementia, especially in the early and moderate stages. (Birks and

Harvey, 2006).23 The NMDA receptor antagonists (memantine) are

effective in the management of cognitive, behavioural symptoms

and daily functioning and are indicated in moderate to severe

stages of AD and VAD (McShane, et al, 2006).24 As their cost-

effectiveness has not yet been established (NICE, 2007) they are not

freely available or prescribed in many countries. Recommendations

regarding their use will depend upon affordability and availability of

specialist support. The process of these drugs in India is much less

23 Birks, J. and Harvey. R.J (2006) Donepezil for dementia due to Alzheimer's

disease. Cochrane Database System Rev,(1): CD001190

24 McShane, R. Areosa Sastre, A. Minakaran, N. (2006) Memantine for

dementia. Cochrane Nalbantoglu J, Gilfix BM, Bertrand P, Robitaille, Y.

Gauthier, S, Rosenblatt, D.S. et al. (1994)- Predictive value of apolipoprotein

E genotyping in Alzheimer's disease: results of an autopsy series and an

analysis of several combined studies. Ann Neurol, 36 (6):889-95.

222

than those in the international market. Despite this, the poorer

people in India cannot afford to buy them. Hence, the need for

governmental intervention to make these drugs available through

the health care system as with other psychotropic drugs.25

More development and research is needed to ensure if

reminiscence therapy (Woods, et al, 2005),26 (Clare, et al, 2003)

could be feasible and effective.27 Unfortunately we do not have any

studies in India which have thrown light on the efficacy of these

non-pharmacological interventions.

5.6.2 The Importance of Carer Interventions

Large literature is available regarding the wide-ranging

potential benefits of care-giver interventions in dementia (Sorensen,

et al, 2006) these include: Psycho-educational interventions, many

of which include an element of carer training, psychological

therapies and cognitive behavioural therapy (CBT), and counseling,

care-giver support and respite care.28

Many interventions have one or more of these elements. There

are several systematic reviews and meta-analyses (Brodaty et al

2003) which have shown the benefit of carer interventions in

25 NICE, (2007) National Institute for Health and Clinical Excellence, NICE

technology appraisal guidance 111 (amended September 2007) Donepezil,

galantamine, rivastigmine (review) for the treatment of Alzheimer's disease

(amended). London, National Institute for Health and Clinical Excellence.

26 Woods, B. Spector, A. Jones, C. Orrell, M. and Davies S.P. (2005)

Reminiscence therapy for dementia. Cochrane Database of Systematic

Reviews, 2. Art. No.: CD001120. DOI: 10.1002/ 14651858. CD001120.

27 Clare, L. and Woods, B. (2003) Cognitive rehabilitation and cognitive

training for early-stage Alzheimer's disease and vascular dementia.

Cochrane Database of Systematic Reviews 4. Art. No: CD003260. DOI:

10.1002/14651858.CD003260

28 Sorensen, M. (2006) Helping caregivers of persons with dementia: which

interventions work and how large are their Effects? Psycho geriatrics, 18(4),

577-595

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preventing or delaying hospitalization or institutionalization.29 Most

carer interventions seem to benefit carer strain and depression with

CBT having the largest impact on depression. Psycho-educational

interventions require the active participation of the carer (for

example in role-playing activities) to be effective. Carer support

interventions are effective in enhancing carer well-being (Pinquart

and Sorensen, 2006).30 For respite care, non-randomized

interventions suggest significant reductions in carer strain and

psychological morbidity. While nearly all of the carer intervention

trials to date have been conducted in high income countries, two

trials of a brief carer education and training intervention are from

low and middle-income countries.

(Fitzpatrick, et al. 2005) In low and middle-income countries,

diagnosis is often much delayed, and survival may be much

shorter. The mortality rates could be higher in the absence of

interventions31 (Dias, et al. 2008) and the severity at the time of

identification could predict mortality. Patients with moderate to

severe illness have a higher mortality than cognitively unimpaired

elderly.32 Again, there is much individual variation because of

29 Brodaty, H. Green, A. and Koschera, A. (2003) Meta-analysis of

psychosocial interventions for caregivers of people with dementia. J Am

Geriatric Soc, 51(5):657

30 Pinquart, M. Sorensen, S. (2006). Helping caregivers of persons with

dementia: which interventions work and how large are their Effects? Psycho

geriatrics, 18(4), 577-595

31 Fitzpatrick, A.L, Kuller, L.H. Lopez, O.L, Kawas, C.H. Jagust, W. (2005)

Survival following dementia onset: Alzheimer's disease and vascular

dementia. Journal of Neuro Sci 15;229-230.

32 Dias, A. Dewey, M. E. D'Souza, J. D'Souza, J. Dhume, R. Motghare D.D.

Shaji, K.S. Menon, R. Prince, M. and Patel, V. (2008) The effectiveness of a

home care program for supporting caregivers of persons with dementia in

developing countries: a randomised controlled trial from Goa, India. 3(6):

e2333

224

undercurrent health conditions and co-morbidity is very common in

this age group.

5.6.3 A Public Health Model Intervention for Prevention of

Dementia

There is a need to recognize the importance of early

intervention strategy and use a public health model for dementia

care. There is some evidence from studies with other chronic

diseases, like hypertension and diabetes mellitus that intervention

programs for vascular disorders and risk factors would possibly

help in dementia prevention too. Greater integration of care and

increased use of chronic disease prevention and management

approach is desirable.

Table 5-3 Population and Individual Level Prevention

Strategies in Dementia Care

Epidemiological research identifies modifiable risk factors and

preventive interventions than reduce the incidence of the disease.

Epidemiological cohort studies indicated protective effects of non-

steroidal anti-inflammatory drugs, hormone replacement therapy

225

(HRT) and cholesterol lowering therapies (statins). However, a

randomised controlled trial of HRT as a preventive therapy in post-

menopausal women indicated, against expectation, that it raised

rather than lowered the incidence of dementia, The two trials of

statins have showed no preventive benefit. The ADAPT trial of NSAIDs

had to be stopped because of warnings of cardiovascular adverse

effects in another trial of NSAIDs (ADATP research Croup, 2006).

Knowing them makes carers to be aware of potential

problems and helps to plan the future care needs. even today

synonymously used with VAD has received less attention than ad

and a consensus on its classification is yet to emerge since there is

no single pathological definition, onset, course and progression of

VAD are different from that in AD. VAD results from reduced blood

flow to the brain’s nerve cells. although the term mid is used to

describe all kinds of vascular dementia, there are still debates on

the classification of VAD and today it is treated as a global category

that encompasses several different disorders. In MID there are a

number of dead regions of brain, which result from a series of small

strokes. The brain cells in a small area of the brain are killed, either

because the blood supply to that area is blocked or because blood

vessels burst. Each stroke may be small, but when taken together,

the dead area of the brain results in memory and reasoning

difficulties of dementia. The loss of function in this type of dementia

depends on the part of the brain that is affected by the stroke

(Dementia Research Group, 2000).33

33 Dementia research group,2011

226

5.6.4 Crisis Points for Care-givers during Dementing Illness

At the first crisis point there is need to give information about

the illness after a work up in detail is done, if needed referral

provided and support given. During the diagnosis there is a need to

address immediate concerns of the patient. At other points there is

a need to help the family understand causes of behaviour problems,

help them deal with their emotions and bring back a balance in the

family. Through the rest of the crisis points there is need to provide

adequate support to the family in helping them to cope with the

various stages of the illness (Kuhn, 1990).34

Using this we can understand that care-givers need to be

helped to deal with these problems. To understand the impact of

care-giving it is important to examine both objectives burden

(physical tasks and familial responsibilities) and the subjective

stress of the individuals. Care-givers perceive their emotional and

physical health, social life, financial status as suffering because of

caring for a demented relative (Cummings, 1992).35 It is generally

recognized that care-givers for demented elderly may suffer from

chronic and emotional strains (Grafstorm et al. 1992).36

Studies of care-givers show that there was generally extensive

physical, emotional and financial cost to the family. Since

behavioural disturbances pose significant management problems

and are in many cases potentially treatable, the amelioration of these

can be of help to care-givers. Factors that have been found to affect

34 Kuhn, R. (1990) Normative crisis of families confronting dementia (CEU

articles )’’. Families in society, 71: 451 – 459

35 Cumming, J. and Benson,D.F. (1992) Dementia a clinical approach and Edition, Henman

Reed Publishing, USA, 379 – 380

36 Grafstrom, M. et el. (1985) “Family burden in the care of the demented

and no demented elderly a longitudinal study”. Alzheimer Disease

Associative Disorder, 9: 78 – 86.

227

care-givers burden include the relationship at the care-givers to the

patient, duration, types, frequency and disruptive effects of aberrant

behaviours. Care-givers burden is ameliorated when the family

members are provided with support, helps in the care-giving, and

facilitates to brief respite for the primary care-givers. Support groups

and other supports in which care-givers can exchange information

and share emotional distress can be of substantial benefit. All

possible measures to support relatives should be arranged.

Several studies have reported that dissatisfaction with the

social support network was associated with distress in the care-

givers (Morris, et al. 1989; Grafstorm, et el. (1992).37 Burnout can

occur when the social support functions are not complete (Pine and

Aronson, 1988).38

Care-givers with high levels of poor health, limitation in social

life and a lack of a positive outlook on the care-giving situation

seem to be more vulnerable to burnout (Almberg, et al. 1997).39

(Kaplan, 1974) says social support is an enduring pattern of

continuous or intermittent ties that play a significant part in

maintaining the psychological and physical integrity of the

individual over time. Some describe support as providing three

37 Grafstrom, M. et el. (1985) “Family burden in the care of the demented

and no demented elderly a longitudinal study ”. Alzheimer Disease

Associative Disorder, 9: 78 – 86.

38 Pines, A.M. and Aronson, (1988. “The burnout measure”. Paper present

at the National Conference on Burnout in thee Human Services.

Philadelphia. Quoted from an article by Almberb, B. Grafstrom, M. Journal

of Advanced Nursing, 25: 109-116.

39 Almberg B. Grafstrom M. and Winblad B. (1997) “Caring for a demented

elderly persons – burden and burnout among care giving relatives”. Journal

of Advanced Nursing 25: 109-116.

228

types of aid.40 Instrumental support such as material, goods and

services, emotional support, information and aid. Support can

influence the effectiveness with which a person or family cope with

stress. In the context of a dementing illness help from friends,

neighbours and others could go a long way in providing some

respite for these families with a dementing elder. The support

available to them may help in reducing their stress enabling them

to deal more effectively with the dementing relatives. Not just the

support available which may vary in size, number, degree but the

families satisfaction with the support will have a bearing on the

perception of the subjective well being they have. The subjective

well-being would be more if members felt satisfied with the support

available to them.

There are studies on the burden are families but are few in

number and have not looked at the subjective well being of the

care-givers. It is important to understand that the care-giver

undergoes in the process of care of an elder relative. Though there

is literature available on the effects on caring on the primary care-

giver and a few on burden. This is mainly in the western set up. In

this area there are very few studies in Indian setting. The role of a

professional social worker is to understand the emotional

framework of not only the patients but also the care-givers and the

support available to them in order to facilitate the development of a

programme and to find out in which direction help should be

provided to these care-givers. It is also important for a social

worker to enhance the Inherent potentials of the care-givers to deal

40 Kaplan, and Sadocks, Synonyms of Psychiatry, 10th edition, Philadelphia,

Lippincot publishers. p. 97-10, Kaplan and Sadocks, Synonyms of

Psychiatry, 10th edition, Philadelphia, Lippincot publishers. p. 97-101.

229

more effectively with the situation. This would have a direct impact

on positive general well-being in caring for their loved one.

As we find more and more families which dementing elders

approaching treatment services, it is essential to have a better

understanding of their situation and cater to their needs more

effectively. In an illness which has a deteriorating course affecting

the very day-to-day existence of the patient. It is important to the

care-givers accept and cope as effectively as possible. Not only this

but providing them with support through other modes such as

increasing social support understanding the area of their lives that

are significantly affected would help the professional render better

services to the care-giver. It is in this background that the

researcher felt the need to study the subjective well-being and

factors, which affect the subjective well-being in these families

caring for a dementing elder. Due to the lacunae in the existing

psychosocial aspects of family care-givers.

Conclusion

The joint family system is fast breaking up, which results in

loneliness, isolation, dependency, poverty, insecurity etc. So,

genuine concern for the well-being of the old and the sick is

disappearing. The morbidity pattern has also changed. In recent

years, there has been a steady increase in the incidence rate of

mental disorders. The family is and has always been the

cornerstone of support for people with dementia. Most of the family

members really want to care for their loved ones but many find it

difficult to do so. As the disease progresses the care-givers are

burdened with more active responsibilities of doing all the basic

care such as dressing, bathing, helping at toilet needs etc. If the

care-giver has yet another job to do, the demands of the caring

work and the additional responsibilities of the care-giver make the

230

life of the person quite trying and difficult, leaving him/her, little

time for relaxation and entertainment. However, employed family

care-givers often experience lack of support and assistance from the

other family members as well as from the health and social care

professionals. As a result, family care-givers develop physical and

mental health problems, arising from stress and strain. It is hoped

that this study on the problems of family care-givers of dementia

patients may throw light on areas such as the level of awareness,

attitude towards their responsibilities and the impact of the burden,

physical, psychological and social-in looking after the patient.

Throughout the world, the family members withstand the worst of

the care of the people with dementia.

dementia – the growing threats and...

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