Alzheimer’s Disease
Intervention and Caregiving
Goh Hui Ching
PL3209
Department of Social Work and Psychology
National University of Singapore
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ALZHEIMER’S DISEASE
I fear I am not in my perfect mind.
Methinks I should know you, and know this man;
Yet I am doubtful; for I am mainly ignorant
What place this is; and all the skill I have
Remembers not these garments; nor I know not
Where I did lodge last night. Do not laugh at me.
- King Lear, Act IV, Scene 7
Introduction
Alzheimer’s disease is an insidious brain disease that has been commonly
misunderstood and overlooked as a manifestation of the natural process of aging. Its
elusive nature did not manifest itself till recent years in Singapore. Since its discovery
in Singapore, the Alzheimer’s Disease Association (ADA) has been set up and steps
have been taken to provide caregiving and medical aid to Alzheimer patients. This
project will attempt to look into important aspects of caregiving and the local
intervention programs in caregiving for Alzheimer patients.
Caregiving
Alzheimer’s disease is not a downward spiral of mental deterioration - timely
intervention for dementia in the aged has been shown to be effective for prevention,
as shown by a local hospital study done at Tan Tock Seng in 1996.
1. The Caregiver
The job characteristics of a caregiver must ensure consistency in his skills that
he may be compatible with the needs of the patient. The caregiver could include
professional caregivers or family members of the patient.
The nurses can teach patients and their family members, so that they can learn
to be independent. Nurses recommend the patient’s home as the best place to recover
from illnesses, though they sometimes help to take care of the patients admist difficult
family circumstances for a short period.
An important note to take is that caring for the Alzheimer patient is not the
same kind of care normally administered to the aged, but rather, of a distinct form that
requires adequate specialised training. This is rather difficult to implement, however.
The ADA (Alzheimer’s Disease Association) has on occasions, tried to organise talks
and seminars on Alzheimer’s disease and how to take care of Alzheimer patients. But
this was met with poor response as the participants (namely the family members) have
tight schedules that makes it difficult for them to come simultaneously for the t
Moreover, the enthusiasm of the caregivers is seldom maintained.
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Less stress cannot be given to the importance of caregivers gleaning skills in
caregiving. The New Horizon Centers (caregiving centers set up by the ADA) are
only opened during business hours and on working days. The Alzheimer patients
often come back after the weekend, bruised, because of falls either due to carelessness
or inappropriate furnishing in the homes.
2. The interaction between the caregiver and patient
The caregiver should be accepting, unjudgemental, flexible and open. He
should also not insist on patients acknowledging their problems since denial may be
the most effective coping mechanism for Alzheimer patients with problems (Zarit,
1980).
He must also be patient and non-confrontational that he may induce cooperation from the patient. Logical arguments can often be discarded since the
patients are often inefficient at deeper thought processing. Gentle words of
encouragement should be adopted instead and care taken not get angry over the
seemingly irrational behavior of the patient. The caregiver should understand that the
patient’s behavior is often unintentional and coincidentally awkward in normal
situations. Also, while responding to patient’s request, take note that it is different
from responding to a normal person since what may seem like a simple answer may
not be so for the patient. E.g. The patient can be upset when he goes off in the wrong
direction when asked to go to the bathroom to comb his hair. An appropriate response
should include grabbing the patient’s attention, ensuring that he comprehends and
processes the information such that he is able to recall, plan and execute the behavior.
Thus, the caregiver can maintain patient dignity and reassure him of fear and
minimize disorientation.
3. Caregiver’s problems
Caring of an Alzheimer’s patient is an extremely stressful job (AnthonyBergstone, Zarit & Gatz, 1988). Often, one only looks into caring for the Alzheimer
patient and neglects the caregiver. The caregiver can face acute emotional and
physical exhaustion and attention should be noted to include the caregiver.
The family of the patient is often the caregiver. Family disunity can stem from
insufficient understanding of the nature of the disease due to a lack of knowledge or
the overlooking of the symptoms of onset of the disease. Other problems include the
refusal of a family in assuming responsibility. In this, family council can be provided
which can help confront issues on (i) family commitment, (ii) family plans, (iii)
family problems or difficulty in caregiving and schedule and (iv) focusing on needs of
the patient and their family members.
(i) Emotional Despair
The caregiver, friends and family and especially the spouse and children of the
Alzheimer patient are often faced with a sense of loss of their loved one, loneliness
and isolation. The patient no longer recognises his loved-ones and sometimes
misidentifies people. No one can really change the reality of the patient and the loved
ones can go through phases of bereavement. The bereaved could first go through a
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stage of denial - that what is happening is not real, then anger - at what has happened
and then bargaining - where he attempts to elicit what gains he can from the situation.
Finally, he can go through grief and then come to a acceptance of the situation. The
bereaved can cope with the different stages and gain peace through the forgiveness
and acceptance of the situation as it is. The bereaved may not necessarily go through
all the phases or alternate between the phases. Generally, the phases comprises
protest, despair and recovery (Weiss, 1988).
(ii) Mental and physical exhaustion
In a culture where the filial piety is valued, especially in the Confucian
culture, the children are often assumed by moral codes to take care their parents when
they are sick or old. They are dissuaded from putting their parents in a care-center due
to the stigma attached to care centers and lest they be misunderstood to be unfilial in
‘shirking their responsibility’ in taking care of the parent. Moreover, the elderly
parents often manifest distress at care centers due to the fear of abandonment. The
children now have to assume a role reversal - while they used to be taken care of by
the parent; they now have to take care of him.
Because of demanding standards in caregiving, the caregiver sometimes
neglects his health, social life and even resigns from his job so that he can take care of
the patient. In a study done by NUH in 1996, more than half of the caregivers was
found to suffer from some form of stress after taking care of dementia patients. Strong
reasons were that caregivers tend to feel isolated, keep problems to themselves and
suffer stress resulting from the patients’ behavioural problems. This is supported by
the study done by Kramer, B., 1992, where caregivers reported Interpersonal family
stress (IFS) more frequently than patients. Among the factors most strongly associated
with the caregivers’ perception of IFS were related to behavioral and emotional
changes of the patients and their changes in sleep patterns.
The accumulated mental and physical stress may manifest in illness behaviour.
The overwhelming stress can also cause resentment, anger and guilt towards the
patient and manifest themselves in insidious forms such as physical, emotional,
mental, and sexual abuse to the patient. In personal inadequacies, the abuse escalates.
Rarely does the patient report abuse, with only physical indications.
4. Reducing stress in the caregiver & Coping strategies
(i) Stress reduction in the caregiver
Increasingly frequent studies have found that reducing stress in the caregiver
has become crucial in giving hope to the patients and their families for a normal life,
especially when extreme stress is experienced by the caregiver. This was shown in a
study done by Dr. Kua E.H., that manifested that 20 percent of carers had minor
psychiatric disorders, mainly depression and anxiety and that carers who lack social
support had a greater propensity to develop psychiatric symptoms. As a carer puts it,
“After a while … I felt like killing him and killing myself too.”
(ii) Coping strategies
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Basically, the caregiver can gain cope through gaining a sense of mastery, self
- esteem and assuming meaning in their role (Taylor, S.E., 1983). Support such as
generous allowances in breaks and job rotation would reduce the demands of
caregiving. The caregiver can also gain control over unpredictable events through the
preparation for emergencies. The caregiver should also be emphasised to be good to
oneself and take care of his health. He can learn to cope emotionally though
relaxation and engagement in cognitive practice, imagery, cognitive restructuring and
cognitive strategies such as CET (Cognitive Emotive Therapy) and Rational Emotive
Therapy (RET). This enables the caregiver to facilitate his emotional and behavioural
growth based on his volition. The therapies are based on the assumption that (I) one
generates his feelings; (ii) One feels pretty much the way he does, and (iii) One can
choose to change his emotions. The cognitive therapies enables them to gain mastery
of their emotional life by managing their anger, shame, self-pity, guilt, anxiety and
depression. But while one acknowledge that while one has power to change certain
things, one should also acknowledge that one has limitations towards things that
cannot be change. Instead of indulging in unnecessary pursuits towards causes that
may be of no consequence, the caregiver could acknowledge and accept the situation
instead and try to make bright through hope optimism. The next paragraph would
elaborate on the psychological mechanism that pertains to this.
Allusions, with a distinction from delusions, can buffer the caregiver against
the harsh reality of the situation through viewing the situation in a more optimistic
light. Allusions have been found to help people deal more effectively with chronic
illnesses. Allusions do not necessarily demand denying happenings in an unrealistic
way in which it can have consequences in limiting coping mechanisms. Rather, they
require one to acknowledge and engage in the necessary coping activities and
perceive the situation in an optimistic and hopeful way, exaggerated if it needs be.
Allusions can be important in helping one cope psychologically.
Support groups have also be found to be therapeutic in that they allow the
caregivers a time and place to share and discuss problems and in ending their isolation
through social comparison. In a study done in 1994, Dr. Kua E. H., Head of NUH
Psychological Medicine Department, it was found that support can help reduce the
stress level of the carer, promote enthusiasm for caring and at the same time, allow
them more time for housework.
(iii) Novel coping strategies
Father demands his things to be put in the common corridor that
causes inconvenience to everyone. Bill angrily tried to explain to his father, but
only succeeds in causing more distress to him. Just when he was to move the things
away, he had a new idea. Bill gives his father a generous reassuring hug and even
indulged him by letting him put his things where he wanted. When Father was
not noticing, Bill quietly moved the things away.
The illustration above shows that the caregiver can come up with creative
ways of coping with patients. In this case, it is done through the understanding the
patient’s cognitive orientation and the employment of the principles of tact. Instead of
a head-on collisions where the caregiver tries in vain to argue with the patient, he can
instead, sympathise with the patient through gentle reassurance, affectionate and
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emotional support and employ the patient’s memory loss to divert and re-channel
asocial, obnoxious, or potentially destructive behaviour. Though one would rather not
‘deceive’ the patient, he could weigh the distress provoked by the patient’s actions to
others and to himself and see that there are ways of deflecting awkward and
unpleasant situations which can cause less emotional distress to the patient and
caregiver.
5. Care-giving facilities
(i) Care-centers
The care center, like hospices, attempts to make the most out of the person’s
last days. “A hospice is not about dying, it’s about living. When people know that
their time is limited, that remaining time is very precious and we want to help them
make the most of it,” Dr. Cynthia Goh, President of HCA.
The residence of the patient could have a comfortable and cozy ambience,
enhanced with physical faculties to make the living of the patient pleasurable. High
technology gadgets and furniture that may create behavioural difficulties could be
removed and the meting of good food and the beautifying of the surroundings can also
make for better living. Communication areas like hallways of corridor like design
could be lessened - they have been found to be negatively associated with
disorientation for recent memory and lack of vitality in dementia patients (Elmstahl
et. al, 1997).
There is however, a pressing problem in housing Alzheimer patients in
nursing homes of Singapore. Most local nursing homes have refused to accept
Alzheimer’s patient because Alzheimer patients are difficult to manage. The ADA is
targeting setting up nursing homes that have the expertise to manage Alzheimer
patients. These nursing homes are ideally planned to be located in the central area of
Singapore where the majority of aged is and where such homes are lacking. Already,
at the Eastern part of Singapore, is a plethora of nursing homes.
The majority of Alzheimer’s patients are yet to be reached and at current,
there are only two acknowledged active care centers by the ADA which are miniature
and difficult to access by the people living far away from the. There are also problems
that afflict the ADA’s plans for building new care-centers. There is often a
discrepancy in wishes for setting up new homes at certain sites by the ADA and the
URA (Urban Redevelopment Authority). Also, there is dissension from HDB
(Housing Development Board) residents about setting up nursing homes below their
homes. Issues of getting adequate staffing and staff supervision to maintain an orderly
nursing home are also limiting. Multi-disciplinary staffing can be considered for a
thorough therapy and caregiving. An ideal staffing ratio would be about 4.2-4.4
(patients to caregivers).
More serious cases of Alzheimer’s have sometimes made it inconvenient for
admission in care centers due to their predisposition towards agitated outbursts that
can cause a domino of extreme distress to the other patients. Even trivial things by the
mildly demented patients, like a patient forgetting to close the bathroom door, can
ignite distress and displeasure from other patients.
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(ii) Programs in Care-centers
Programs in the care-centers should look towards maintaining the quality life of
Alzheimer patients. The study done by Whitehouse, P. J., 1992, suggests that
maintaining quality of life (QOL) in patients with dementia should be a central goal of
health care professionals
The activities for patients can be individual or group. They should include
innovative and flexible activities that can keep them occupied, give them a sense of
meaning and purpose to their lives and at the same time provide emotional comfort.
Activities as such proved meaningful throughout the day for both patients and staff
(Hasselkus, B. R., 1992).
(a) Mental activities
The daily program for the Alzheimer patient in the Horizon Centres
include interactive play of mahjong, watching of television, watching of old
operas and sometimes, reminiscence therapy – where patients are brought to a
“Reminiscent Room” to give pleasure and induce a familiar and comfortable
atmosphere.
Other programs could also look into fostering self-esteem and the
learning of attitudes and skills which help them better cope with themselves.
Some patients need to be constantly assured by the caregivers and their family
members that they are not at the care centers to be disposed off, which is a
common worry of patients.
Activities could also look into spiritual aspects of the patient, which
can give them meaning and purpose to living. They can include spiritual
counselling, prayer; hymn singing or looking at photos of familiar places and
faces, the differences as pertaining to the individual spiritual or religious
wishes of the patient.
Other suggestions of activities which jog the patients mentally would
include word games and social activities such as ‘table activities’ (e.g.
mahjong) and visits from family.
The patients can also take part in recreational activities like the
appreciation of art, music, looking after pets and plants, reading, doing
artwork, dancing and playing, games. A tinge of humour in daily interaction
with the patients can also add spice to life.
(b) Physical activities
The Horizon center allows patients to do house grooming activities
such as sweeping the floor. This can keep the patient occupied and sometimes
acts as a lure to patients who are reluctant to leave their homes for the carecenters until they are told that they are there to assume a job. The routines in
activities and treatment could also allow flexibility in change if circumstances
warrant.
Regular toilet visiting times and meal times can also be advocated to
ensure healthy habits. Incontinence pads can be considered for patients who
have bladder problems. Little conveniences like the replacing of buttons which
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require awkward maneuver with manageable elastic bands and the putting up
of little signs to jog the patient’s memory can also be considered.
Other physical activities could include exercise, cooking, taking care
of plants and massage.
(iii) Long Term Care
(a) The Nursing home
The nursing home should have ongoing training to keep efficiency and up
to date caregiving skills and facilities.
(b) Strategies for Decisions in Caregiving
The loved ones of the Alzheimer’s patients could ask the following
questions in helping them make decisions for caregiving: (I) Why did they
decide to place their loved one in a nursing home and how will life be
different for the patient and themselves hence? (ii) what are the schedules of
the caregivers and how can they make plans? (iii) Do they have enough
financial resource for caregiving?
Help can be consulted at organisations such as the ADA, MCD (Ministry
of Community Development), MSW (Medical Social Work) and the MOH
(Ministry of Health), who can advise the caregivers.
(c) Marketing Caregiving Services
Families have obligations and fears reinforced by societal pressures to
keep patients at home at any cost but apparently, a high percentage of them
will realise that are going to need nursing home care and its importance. It is
important to make known to the patients and their families the various kinds of
services available.
6. Diagnosis and Pharmacology
(i) Assessment, Diagnosis and Prevention
(a) Clinical Assessment and diagnosis
A clinical assessment of a patient can follow the DSM-IV classification. It
should cover diagnosis, like whether the patient is demented or not, whether
there are substance related disorders, psychotic, mood, anxiety, somatoform,
sleep or adjustment disorders. It should also cover other conditions that may be
a focus of clinical attention, such as the presence of coexistent physical
diseases such as metabolic disorders, thyroid disease, and liver disease and
psychological factors that can affect the medical condition. Problems related to
abuse and neglect and environmental stress and life events should also be
checked for. [Refer to 6(iii)(a) for pharmacological assessment].
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(b) Prevention
An autopsy attempts to verify the clinical diagnosis and to provide
adequate genetic counselling. However, there are yet confirmatory evidences
that the plaques and tangles conclusively depict Alzheimer’s disease.
Questions that pertain to legal issues also include: (I) who gives the
permission for autopsy and (ii) to whom should the permission be given.
The diet of the patient can also be checked to reduce predisposition to
Alzheimer’s Disease. In the study done in 1995 by Dr. Kua E.H. of the
Memory Clinic, NUH, elderly Malay women over 65 were found to be at a
higher risk of suffering from stroke dementia – about 4% compared with 1%
for Chinese men and women. The possible reasons included an unhealthy diet
that predisposes the Malay women to obesity and stroke dementia.
(ii) Scales
Scales could include measurements of brain functions, brain physiology and
the general functions of the patients.
Scales that include the assessment of brain functioning, cognition and memory
include the:
(i)
(ii)
(iii)
(iv)
(v)
Bedford Alzheimer Nursing Severity scale (BANS-s) - for comprising
cognitive and functional items.
Folstein Mini-Mental status exam.
Organic Brain Syndrome scale - for assessing confusional symptoms and
disorientation.
Blessed Information Memory Concentration (BIMC) - for moderately
demented persons.
Minis-Mental State Exam (MMSE), like BIMC, with additional features for
testing language and Visuo-spatial relations
Scales that include the assessment of brain physiology includes the:
(I)
(II)
(vi)
EEG – for sieving out other illnesses that appear to be dementia.
Cerebro-spinal fluid examination – for eliminating important diseases.
X-rays and CAT scans – to detect minor strokes or tumours, which may
produce dementia.
Scales that include the environment of the patient and their functioning ability include
the:
(i)
(ii)
(ii)
(iii)
Therapeutic Environment Screening Scale Tests.
Instrumental Activity of Daily Living scale (LADL)
Physical Self-Maintenance Scale (PSMS)
Clinical Global Impression (CGI)
(iii) Pharmacology
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(a) Pharmacological Measurement of disease and associated behavioural problems
The general principles that accompany the pharmacological assessment of the
patient include asking what the empirical treatment goals and options are their
pharmacological considerations. This is followed by evaluation, assessment of
whether goals have been achieved, whether there has been a general change or if
there are any drugs the patient can do without.
Consistent evaluation of the patient’s emotional, physical and psychological
needs are also especially important when the patient is no longer able to express
himself as before.
(b) Paradigm of Drug treatment in behaviour problems.
Table 1: Paradigm for rational drug use in demented nursing home patients.
A. Accurate diagnosis
1. Dementia
2. Specific behaviour problems
B. Define treatment goals
C. Other treatment options
D. Pharmacological considerations ( individualise
Therapy )
E. Clear prescription
F. Evaluation of therapy
1. What is the current regimen?
2. Can any medications (or procedures) be
stopped?
3. Is it working?
4. Changes in diagnoses or treatment goals?
5. Can treatment be simplified?
6. Are any problems due to drugs?
G. Team approach essential
(Adapted from Alzheimer’s disease Long Term Care, Jackson et al)
(c) Drugs
Caregiving and treatment of Alzheimer patients should assume a multi-model
approach. Medication is only used in adjunct to behavioural and environmental
treatments in individual and group therapy, including parts played by the family and
society.
The cause of Alzheimer’s disease is still elusive and there is no current known
‘cure’ for it. However, psychotrophic drugs can have tremendous symptomatic relief
benefits. Cholinergic drugs are also popular in that they alter the physiological
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amounts of ACTH (Adrenocorticotrophic hormone), their aberrant physiological
amounts which have been found to be correlated with Alzheimer’s Disease.
Although drugs may be useful for relieving symptoms of Alzheimer’s disease,
the side effects and drug interaction effects of the drugs are also to be considered and
weighed against their potential benefits.
(1a) Anti-psychotic drugs, tranquillisers and neuroleptics.
E.g.
- Butyrophenones e.g. haloperidol
- High potency phenothiazines, trifluoperazine and thiothixene
- Low-potency phenothiazines, thioridazine, mesoridazine and promazine
These drugs reduce dopamine in the brain. They are effective in
relieving psychotic symptoms in patients.
(1b) Anti-psychotic drugs and their side effects
The side effects include extrapyrimadism, Parkinson’s symptom type
of tremor, gait disturbances; for some, tardive-dyskinesis, agranulocytosis,
akathesia, orthostatic hypotension, quinidine-like effects on cardiac
conduction, anticholinergic effects such as dry mouth, dry mouths, difficulty
with visual accommodation, constipation, urinary retention, increased
confusion and balance of Parkinsonian side effects.
The World Health Organisation (WHO) has reported on
chlorpromazine (Thorazine) as a drug to be avoided in older patients due to its
side-effect profile (16) – the drug has many anti-cholinergic effects which the
elderly are less tolerant to.
(2) Sedative-hypnotics
E.g.
- Benzodiazepines
- Chloral hydrate
- Barbiturates
- Other sedative-hypnotics (glutheimide, methaprylon, ethchlorvynol,
meprobamate).
These drugs are used for managing anxiety, distress and inducing sleep
in the patient. The side effects of barbiturates, such as unnecessary sedation
and confusion and its addictive effect, should be especially noted
(3a) Anti-depressants
E.g.
- Tricyclic anti-depressants
- Cyclic anti-depressants (fluoxetine, trazedone)
- Monoamine oxidase inhibitors (MAOI)
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(3b) Anti-depressants and their side effects.
These drugs are pharmacologically dirty, produce anticholinergic
effects, sedation, orthostatic hypotension, quinidine-effects on cardiac
conduction, H1 and H2 antihistamine activity, which may help allergies, reduce
itching and reduce gastric acid secretion, weight gain and lower seizure
threshold.
(4) Antihistamines
These drugs are used for their sedating effects and occasionally for
their anticholinergic effects. Side effects of the anticholinergic effects
including delirium and confusion.
(5) Anti-convulsants
These drugs are used for treatment of seizures. Their side effects
include angry and violent outbursts, sedation, ataxia, and decreased fine motor coordination.
(6) Cholinergic drugs
E.g.
- dopamine precursor – L-dopa,
- ACTH precursor – choline
 Side effects include diarrhoea, irritability, loss of appetite & dry mouth.
- Lecithin
 The disadvantage of lecithin is that it is expensive.
 Lecithin is used for its side effects, which are like those of choline.
Studies have supported the use of cholinergic drugs in treating Alzheimer’s
disease. The study done by Siegfried, K., 1995, reviews and supports evidence for the
efficacy of aminoacridines (tacrine, velnacrine) in treating patients with Alzheimer's
disease. The use of tetrahydroaminoacridine (THA) that prevents the breakdown of
adrenocorticotrophic hormone (ACTH) also has positive effects, including benefits on
short term memory (Heston & White, 1991); but it is not known whether there are any
long-term benefits.
Cholinergic drugs and ACTH are most often prescribed for local Alzheimer
patients but ACTH is usually stopped if it causes severe liver damage.
Other possible drugs include silicon, which can play potential preventive roles
in presenile Alzheimer’s Disease, as supported by a study done by Taylor, G.A. et. al.
in 1995, which found an inverse relationship between dissolved silicon and
aluminium as predicted.
7. The Patient
Care of the patient should assume as tactful and gentle a way as possible. E.g.
In the washing of the patient’s hair, avoid direct running of water to head. Place the
hand on the head and let water run on the hand first to prevent unpleasant shocks.
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While changing soiled clothes when the patient refuses- spill water on the clothes or
tell them to get changed for a special occasion.
Care should be taken not to overreact, but rather, have a gentle composure
maintained by never forcing the situation, being patient and giving gentle
explanations. The patient can have a great deal of happiness in the average day but
this happiness depends a great deal on the family living arrangements of the patient.
There is an ongoing pressing need for information on Alzheimer’s Disease,
especially when most do not recognise the symptoms of Alzheimer’s Disease in
Singapore. Information is required, for questions such as: (I) what is new in research,
(ii) what drugs are available and (iii) what are the advances in caregiving – are there
new facilities? [For information on Alzheimer’s disease, services and caregiving,
refer to References, pp17 and Care-centers, pp19].
8. The Patient’s Problems
(i) An A-Z list
The following is an A-Z list of the problems encountered by patients with
tactful ways of solving them:
1. Abuse - From caregivers. [See pp 4, para 3].
2. Agitation – They can become obsessively worried, fearful or angry. This could be
an effect of sun-downing (the going down of the sun from 3.00-7.00 p.m.), a
biological response to the fading of daylight. It could also be due to physical
distress (tiredness, hunger) or emotional distress (boredom, loneliness, grief, fear
& hopelessness). Sometimes, trivial events like the ringing of the telephone can
cause agitation. The caregiver should take note not to let the agitation rub off the
caregiver since agitation is catching. The patient can be pacified with gentle
reassurance.
3. Alcohol – Problems of the patient may be exaggerated through excessive use of
alcohol. The most important thing here is to reduce the amount of intake of
alcohol.
4. Anger – Anger can be deflected through distraction, ignorance of the anger or
through relaxation techniques.
5. Dehydration – Patients should drink at least 6-8 glasses of plain water. Confusion
increases in people who are dehydrated.
6. Depression – This can be managed by anti-depressant drugs.
7. Driving – Patients should especially refrain from driving especially when having
Alzheimer’s disease would impair judgement.
8. Eating – If patient loses appetite, try high protein milk with fruit.
9. Hoarding – The caregiver can try to make the patient keep things where he can
find them. [Refer to illustration on pp 5, under Novel Ways of Coping].
10. Hygiene – In cleaning after the toilet, wipe backward as wiping forward may
cause infection. Shower the patient regularly.
11. Paranoia- Paranoia is usually a rational response brought about by the debilitating
disease. The caregiver could try to respond with sensitivity and patience.
12. Psychiatry – [see 6(iii) on Pharmacology].
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13. Repetitive questions - Resolution could come when one deciphers the underlying
problems beneath the repetitive questions. Try to remember what response works
most of the time.
14. Safety – Medi-alert bracelet can be worn on the patient in the case when the
patient gets lost or suffer from debilitating symptoms of the disease. Phone
numbers, addresses and nametags can be sewn on clothes. Visual cues can also be
used as safety signs e.g. a family painted a big “STOP” sign to remind their
mother not to leave the house. Medication should be kept safely, with doses
measured out by caregiver, rather than trusting the patient. Sophisticated locks and
alarms at the homes can prevent the patient from wandering and getting lost. The
minimisation of sharp edges of furniture or the loose edge of carpets can check
potential trips that may cause falls.
15. Sexual inappropriateness – The idle wandering hands of the patient may look to
fiddling with clothes. Find something for those hands to do. Suspect also, whether
the clothes are uncomfortable. The patient’s exposure of himselve could also be
an indication that he wants to go to the bathroom. In matters of sexual intercourse
of the patient with the spouse, do not forbid the patient or the spouse, as it can still
be satisfactory experience for the patient and his spouse.
16. Sleep - [See pp 10, under sedative-hypnotics].
17. Wandering – see point 15, on safety.
(ii) Other problems
(a) Financial
Other than income or insurance that can cover broken furniture, expenses on
professional caregivers’ services, medication or the inability of the caregiver to
work, the family of the patients can look towards other avenues of coping with
financial matters. Programs such as Medisave and Medishield should not be
overlooked.
(b) Medical health
A host of medical professionals can help with different facets of the patient’s
health. E.g. The psycho-geriatrician and psychologist can help in dealing with post
fall syndrome (fear of walking after falling) and check the mortality of the patient,
which increases with falls. The doctor can also assess patient criteria, such as
whether the patient belongs to the end or moderate stage and whether they should
be warded specially or sent to the discharge unit. The radiologist and neurologist
can perform scans on the brain physiology and functioning of the patient.
(c) Legal
Local laws on elderly care and the future of a patient when his ability to take
care of himself decreases should also be looked up.
(d) Behavioural
Alzheimer – Caregiving and Intervention
15
Behavioural modification doesn’t usually work well on Alzheimer patients
since they forget the consequences easily. Asking the patient to perform self-check
can be problematic too. In communication, one can come across difficulty in
verbal communication (the patient’s language often omits nouns, which he
forgets). Communication can be enhanced by reading the patient’s body language.
E.g. A patient said, “These little ones are tired now” and rubbed her feet. In this,
the caregiver thought she meant she was tired but on removing the patient’s shoes,
found that they were sore from the ill-fitting shoes. The caregiver could try to
decipher intentions behind awkward phrases through paying more attention to
body language.
(d) Mental
Reality Orientation (RO) can help the patient adapt to daily living, especially
when “sufferers are frightened by their loss of even simple functions such as
memory, bladder control and cleaning themselves, they become depressed or
agitated,” Dr. Kua E. H., President of the Gerontological Society. Care should also
be taken to ensure that RO programs and devices (such as calendars and object
nametags) are kept up to date.
However, RO has its limitations. E.g. a patient weeps over why his dead
mother hasn’t been able to see him; if told with blatant honesty that his mother is
dead, it may lead to great pain and confusion and he may not be able to understand
the reality of the situation anyway. It should be stressed again that though one
often prefers honesty in communication, it is really not kind to bring about grief,
rage or heated denial, for what could have been avoided with compassionate
assurance. It is not the duty of the patient to come into our reality but rather, for the
caregiver to respect the reality of the patient. One should take into account,
emotions needs of the patient as weighed against facts.
The patients, in addition to the caregivers, can also have their own support
groups. The study done by LaBarge, E. & Trtanj, F., 1995, discovered elements
that contribute to a successful support group. These elements include (1)
incorporating group exercises attuned to memory functioning; (2) setting up
communication facilitators and also (iii) setting up facilitators that are able to
identify when participants are experiencing difficulties. The patients can also be
given counselling in these support groups and also assured that they are willingly
accommodated and helped spontaneously.
9. Community Services
(i) Information and Help Dispersion
(a) Importance of Information
It is especially important to disseminate information on Alzheimer’s Disease
in Singapore. Alzheimer’s patients in Singapore are being diagnosed too late,
victims seeing doctors only years after the disease has set in; “Most Singaporeans
don’t even realise that it is a disease. They just dismiss it as a normal part of
ageing,” Dr. Kua E. H., Consultant psychiatrist at National University Hospital,
NUH.
Alzheimer – Caregiving and Intervention
16
(b) Methods of Disseminating Information and Help
Information could be dispersed through different levels of the media.
Programmes on television at the MRT (Mass Rapid Transit) stations, clinics,
polyclinics and hospitals during waiting time can educate the public. Pamphlets
can be strategically placed at medical centers, care-centers, community centers and
at libraries where people can pick up at leisure. With the advent of more
sophisticated technology, information can also be disseminated through the
Internet. The ADA has a local webpage [refer to Websites, pp20] and people can
conduct searches for international information on Alzheimer’s Disease. There is
also MediNet* that links various local organisations through the computer
network. National campaigns or annual campaigns such as World Alzheimer’s Day
(in the late phase of the year) can also be held to promote awareness of
Alzheimer’s Disease. Charity dinners and fund raising projects can also aid in
raising funds for Alzheimer’s patient. In between the public and private sectors,
there is also a host of community organisations, such as voluntary welfare
organisations, clan associations, religious organisations and trade unions which can
help to increase the host of medical faculties. The MSW (Medical Social Work)
department in hospitals also helps families with family related health problems.
*Table 2: MediNet
Drug supplier
- Receives orders for
drugs faster
- time between order
& delivery of goods
faster
Min. of Health
Hospital
- Faster assess to
critical medical data
during an emergency.
- Less forms to fill
Polyclinic
CPF Board
- less forms to fill
- faster processing
- use of medical
of information
information database - access to medical
- notification of
information
infectious diseases
database
to MOH
- Notification of infectious
S’pore Network
Service
Min. of Envt
- Receives statistics
on infectious
diseases
Min of Labour (may
linked to the network)
(ii) Expanding nursing homes
Business for commercial nursing homes can be expanded especially when they
are of much popularity. In 1993, the Department of Statistics did a survey on nursing
business and showed that business has been growing then for many of the 22
commercial nursing homes in Singapore over the past year. Emphasis should be given
to extend health care for nursing, especially when the population of the aged has been
projected to increase from over 246,8000 as at 1990 to 330,000 in the year 2000. I.e. a
2 % increase to 11% of the total Singapore population. Also, from statistics derived in
1994, the government expects a five-fold increase in the number of dementia sufferers
Alzheimer – Caregiving and Intervention
17
over the next 35 years with the number estimated to be more than 15,000 by the year
2030. Social responsibility towards helping the old people who have contributed to
society should also be stressed. The Econ Nursing Home is an example of a home that
runs with the philosophy of social responsibility as such.
Regional health care networks for the aged would be set up by the year 2000,
which will cater to about 100,000 elderly people; each network will have its own
hospital with a department of geriatric medicine, polyclinics, day care centres and
other support facilities.
(iii) Financial Support
Financial support can come from many levels of the community. The
Community Chest, business organisations, government revenue and individual
private donations can support Alzheimer patients financially. Organised programs
such as Medisave and Medishield are alternatives in dealing with financial matters.
Care-centers
1. Associations
1. Alzheimer’s Disease Association (ADA)
The New Horizon Centre
Address: (I) Blk 511, Bukit Batok Street 52.
(ii) Blk 151, Lorong 2 Toa Payoh
#01-468
S (310151) (This will be re-located to the void deck of Block 157,
Lorong 1 Toa Payoh)
2. MOH (Care Liaison Service)
(i) Elderly Sick – Home care placement
Tel: 320 9192
470 8426
470 8425
(ii) Family Health Service
Tel: 225 2844
(iii) Healthy Living Information



Healthline ( Personalised Service )
1800 223 0313
Healthline ( 24 hr automated service ) 1800 742 2066
Health education /promotion materials 1800 223 0313
3. Ministry of Community Development (MCD)
Alzheimer – Caregiving and Intervention
Department of Continuing Care
Medical Audit and Accreditation Unit
Tel: 258 6527
4. Community services (Dept of People’s Association)
Tel: 340 5188
5. Chor Befrienders
Pager: 9 209 2948
6. Home Nursing Foundation (HNF)
7. Hospice Care Association (HCA)
Tel: 251 2561
Fax: 352 2030
Address: 26, Dunearn Road, Ground Floor, Singapore 1130.
8. Nightingale Nursing Home
Address: Braddell Road.
9. Presbyterian Welfare Services
Tel: 270 5775
10. Sage Helpline
Tel: 353 8633
11. Saint Joseph’s Home for the Aged.
Address: Upper Jurong Road.
12. Serene Nursing Home
Address: Joo Chiat Lane
13. The Bukit Merah Friendship Club.
Tel: 562 1382
14. Wesley Methodist Church Social Service Funds
Tel: 336 1433
18
Alzheimer – Caregiving and Intervention
19
2. Hospitals
1. Alexandra Hospital, Geriatric Centre.
2. East Changi Hospital.
3. Central Tan Tock Seng Hospital.
Address: Moulmein Road.
4. Mount Alvernia Hospital, Assisi Wing
5. West Alexandra Hospital.
Address: Bukit Merah
Acknowledgements
Many thanks to the staff of ADA who have kindly allowed us to visit their
New Horizon Centres and provided us with insight into caregiving and intervention
issues. I would also especially like to thank psychologist, Donald Yeo, of Brain
Centre, Singapore General Hospital, for his help and enthusiasm in providing contacts
for my project and Mary of Bukit Batok New Horizon Centre for her time in granting
Marissa, my project-team mate, and I an interview. Finally, I would like to thank
Marissa for an excellent partnership.
References
Videos (National University of Singapore Library)
(i) Caregiving
1. Assisting families of patients with Alzheimer's disease (CVC7213)
2. Caring for residents with Alzheimer’s disease (CVC7792)
3. Alzheimer's disease: a multi-cultural perspective (CVC8321)
4. When someone you love has Alzheimer’s: practical advice for caregivers
(CVC8610)
5. Dealing with Alzheimer's disease: a common sense approach to
Communication (CVC6678)
(ii) Diagnosis
1. Coming to terms: when memories dies (MVC220)
Alzheimer – Caregiving and Intervention
20
(iii) Psychosocial Impacts
1. My challenge with Alzheimer's disease (CVC8426)
2. An Alzheimer's story (CVC2689)
Websites
(I) Local: http://www.asianmedicalcity.com/supgroup/~ada/index.htm
(ii) Foreign: http://dsmallpc2.path.unimelb.edu.au/ad.html
http://www.ccc.nottingham.ac.uk/~mpzjlowe/lewy/alz.html
http://www.nh.ultranet.com/~alzease/links.html
http://www.alzheimers.com/site/SITEREVIEW/SRT10318.HTM
http://www.pitt.edu/~klpst18/Links.htm
http://www.alzheimer.ca/alz/content/html/society_en/society-whatwedo-eng.htm
E-mail
Please E-mail Heather at: art60380@leonis.nus.edu.sg
heatherghc@hotmail.com
for more information on this project.
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