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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).
10 Dementia Report of India, 2010.
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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.
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(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
(Dementia report of India, 2010).15
13 Dementia Report of India, 2010.
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
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Figure 5.6 Trends in Dementia Prevalence by Age Overtime (2010-2050)
Source: Dementia report of India, 2010
Figure 5.7: Estimation of number of PwD over 60 years in India between 2000 and 2050
Source: Dementia report of India, 2010
The future projections are estimated on the assumption that
prevalence of dementia is stable over time, which may not be true. If
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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
(Dementia report of India, 2010).26
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
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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
223
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.