UNIT 2 ISSUES IN CAIUNG

Structure
2.0 Objectives
Introduction
Planning for Caring
Options in Caring
Challenges in Patients with Functional and Cognitive Deterioration
2.4.1 The Initial Stage
2.4.2 Mild Alzheimer's Disease
2.4.3 Moderatc Alzheimer's Disease
2.4.4 The Moderately Severe and Severe Level of Alzheimer's Disease
Major Concerns Related to Caregivers and Family Adjustment
Abuse/Neglect of the Elderly
Family Counselling
Support Gro~lps
Let Us Sum Up
Key Words
Answers to Check Your Progress

2.0 OBJECTIVES
After completion of this unit you should be able to:
identify various issues of caring for the elderly and discuss the options in planning
for it;
enumerate challenges of caring in patients with mental and physical disabilities;
discuss issues of neglectlabuse in the elderly; and
describe the need for counselling for the caregivers and respite care.

2.1 INTRODUCTION
Aging brings with it physical, emotional and social changes. There is limitation of physical
mobility related to joint and bone degeneration; memory impairment and general intellectual
slowing. These all contribute to conversion of the independent and active individual to a
dependant and often insecure personality.

Retirement is an extremely major milestone in the life of an individual. Sucldenly these

adults find themselves with much more time on their hands and much less productive
work. Worst is the feeling of dependency on the other members of the family lowering of
self esteem etc. They also feel out of place with the younger lot and let us not forget the
physical challenges as poor energy levels, changing dietary habits, insomnia and adjusting
to loneliness and relative isolation can be a major factor of concern. I'm sure you may
have observed this with an elderly member at home This is the time when they need you
and your caring attitude and even more important the emvtional support.

In this unit, you will learn about caring- when it is needed and why it is needed. We shall
also explore the various options in caring, which may be day care, home care o r
institutionalisation. You should familiarise yourself with the disabilities-physical,
mental or social which would require an elderly to seek or need a caregivers help. You
must also know about the stress of a caregiver and the negative issues like elderly abuse Issues in Caring
and neglect associated with care giving.

-- - --

2.2 PLANNING FOR CARING

In order to plan for caring, one must understand why caring is required. The carers need
to be identifid. They could be part time or full time carers.

When does Special Caring Start and Why

Caring is the most basic of human needs, but becomes more important in the light of
special requirements of the elderly. There could be predominantly physical or mental
challenges but commonly one needs to focus on both aspects of functioning.

Identifying these needs is an ongoing process but may be precipitated with a medical
illness as stroke, parkinonism, a severe depression etc. It is at such times that the caring
will require more specific inputs. Among the most complicated areas of caring are the
dementia's where clients have little insight i n t o their problems and cognitive
deterioration makes their intellect feeble. Science and medicine can offer very limited
options-it is only rehabilitative m e a u r e s which help to support and make these clients
lives manageable.

Identifying the Carer's

Who has the primary responsibiljty for the patient ? Is this caregiver a spouse ? An adult
child ? A sibling ? A friend who has assumed the caregiving role ? or is it a trained but
unrelated caregiver.

The relationship to the patient is of prime importance. The caregiver's prospective long
term availability and commitment to helping the patient at home are very important
decisions at the outset of this process. Let us look at the various categories of care
givers.

Related (Part time) Carer

In our culture as in many other eastern societies it is considered the moral duty of the
family to look after their elderly. With the changing social systems and dual wage earners
not all families, however much they may want to, can look after the elderly at home.
Family members are more likely to be well versed in the systems at home and know the
home environment and its details better than an outxlder. Knowledge of patients likes
and dislikes are important in the care giving process.

Because of the constraints of time, the family members who should ideally be taking
care of the elderly are compelled to look for alternatives-such as employing a nurse or
a full time trained caregiver.

Unrelated (Full Time Employed Carer)

There are available trained caregivers apart from the nurses, though in a small number
and limited mainly to the metropolitan cities. These are people with minimum basic
qualification and some experience available for both full time and part time situations.
The benefits of such caregivers are:

1) They are trained for the purpose.

2) Offer full commitment of their time.

3) They have reasonable accountability to their employers.

The caregiver (related or unrelated) should have at least basic education. It is necessary
for him or her to be able to read the names of the medicines, follow the prescribed diet
chart and should definitely have knowledge of HYGIENE.

A trained caregiver in addition to the above will also be able to :

1 Psychosocial Geriatrics 1) Take Blood Pressure

2) Give First Aid

3) Help with b'athingltoilet management

4) Help with exercises

5) Check for and prevent bed sores

The trained caregiver should also have some basic knowledge of mental health- handle
the patient's mood swings/tantrums-which could be in the form of anger,
aggressiveness. More so in the case of patients of dementia and Alzheimer's-handling
them needs considerable tact and patience.

At times the patients can even turn violent and physically attack the carer. The caregiver
ideally needs to be a calm and pleasing personality to be able to take care of such
demanding situations.

Gender Issues

Male and female caregivers exhibit many differences with respect to roles, expectations,
perceptions of their situations and behaviour. The gender may affect how a caregiver
expresses emotions, adjusts to changes in role, utilizes social supports, and seeks and
accepts help.

Female caregivers, being more naturally suited for the role of nurturers, may find the care
giving role more compatible. It has been observed that there is a preference for female
caregivers for female patients and a male caregiver for a male patient. It has also been
seen that where the patient is heavy and has functional limitations male caregivers are
more suitable.

It goes without saying that irrespective of the gender the caregiver himselftherself be in
a reasonably good state of physical and mental health and their personality should have
some desirable traits like:

1) Sensitivity to others needs

2) Positive attitudelfriendliness
3) Flexibility

4) Conscientiousness

5) A sense of humor

6) Ability to keep an emoiional "distance" from the patient.

OPTIONS IN CARING
The best place for providing care giving is the home. However, due to various avoidable
and unavoidable-reasons, it may not be possible to care for the elderly at home. In such
situations, day care or institutionalization may be an alternative.

Home Care
There is no environment more beneficial for a patient than hisher own home. Yes, there '

are situations where the home environment may not be too conducive due to family
discordfriction. Commonly, the elderly resist being moved away from their familiar
surroundings and objects and are only too happy if they can be cared for at home.

The home care provider can either be a related member or an unrelated paid attendant.
With the latter; family members get some regular respite-a very essential component
of a home care programme.
 Issues i n Caring

Fig. 2.1: Reassurance for periods of agitation

If and when the family decides on utilizing an external care worker they would need to
keep in mind :

1) Hislher level of training and maturity.

2) The carer needs to be familiarized with the patient -as an individual-with his
likes and dislikes, his hobbies etc. as this will help in the rapport building.

3) The family as a system has to be supportive towards the carer and understand
their need for respite, stress reduction etc.

Day Care

Day Care is often a kinder option. A Geriatric Day Care is a ideal solution in the sense that
the elderly get an opportunity to socialize with members of their own age group, may
follow a pattern of activities, suitable to their needs and limitations. They are able to get
the special care, which they may require, for example as in the case of dementia's and
Alzheimer's disease.

This offers the family some respite with the patient being away from home for some
hours. This way the patient gets the benefit of the home environment as well as special
attention at the Day Care and the family is able to, without any feeling of guilt, do their
duty and get their bit of respite as well.

~ n f o r k n a t e the
l ~ concept of Geriatric Day Care has not developed in India as it has in
the West where this is a common feature and the patients are provided with pick ups and
drop off s through community participation. This is definitely an area, which probably
needs more attention in our country.

Institutionalization
The decision to place a relative in a hospital is usually not reached in a day. If not
precipitated by an unexpected crisis, it is reached over time. Families find it extremely
difficult to place the relative in nursing home or a hospital for prolonged periods. They
often say "this is something I will never do" as they feel placing a loved one in an
institution is like abandonment.
Psychosocial Geriatrics Caregivers vary in their reasons for nursing home placement just as they vary in their
caregiving situations.

Common reasons for placing a patient in a nursing homefhospital include:

1) The patients need for skilled nursing.

2) The doctor insists.

3) The caregiver cannot manage the patient's behavioural problern.

4) Problem with home-health aides.

5) The caregiver is emotionally exhausted.

6) The caregiver becomes ill or dies.

Institutionalization is another phase in the continuilm of care where necessary.

Check Your Progress I

Flll i n the blanks:

1) The carer needs to be fanlilial-ized with the patient as an ............................................

2) Special care i> required in case\ like . . . . ...........................................

and .................................

3) ................................................................. nlld ................................ are some

desirable qualities In a cdregiver.

4) A trained caregiver should be able to ............................... .,..............

................................and ............................ of a patient.
5) The options in carin, are ........................., ....................................................
and ........................................................

6) .....................................ic the ideal option in caring becai15e ........................................

2.4 CHALLENGES IN PATIENTS WITH FUNCTIONAL

AND COGNITIVE DETERIORATION
Let us go over the challenges in patients suffering from the dementia syndromes most
prominent of which is Alzheimer's disease (AD) :

2.4.1 The Initial Stage

In the initial stages the most noticeable outward signs include forgetting names, losing
the train bf thought during conversation, losing a word or expression or misplacing an
important item (i.e. memory & emotional disturbances).

The Caregivers concerns are centred on:

Decreasing situations which precipitate anxiety.

Treating the person's manifest anxiety.

Maintaining the person's involvement in usual activities.

e Watching for significant behavioural changes.

 Issues in Caring

Fig. 2.2 : Forgetfullness - a sign of initial Alzheimer's disease

2.4.2 Mild Alzheimer's Disease
At this stage the person may get disoriented and often get lost. Patient may or may not
need assistance as they can often recognize familiar faces and can travel alone to familiar
places and perform activities of daily living like bathing, dressing, eating, toileting and
commuting (i.e. difficulty in orientation to space/time/objects)

Fig. 2.3 : Mild Alzheimer disease can travel alone to familiar places

Here the Caregiver's concerns should be:

Maintaining the patient's self esteem.

Balancing the patient's need for independence and security.
Obtaining legal and financial advice for long-term care planning.

Avoiding social situations that increase the patient's anxiety.

Planning appropriate physical and pleasurable activities such as long walks.

Building a sociaYfamily support network.

Psychosocial Geriatrics 2.4.3 Moderate Alzheimer's Disease
Patient's thought process becomes more disorganized and judgement and decision making
processes becomes affected. The individual begins to have more difficulty with familiar
activities and requires help for hisher day-to-day activities in the community and the
home. The patient may even tend to forget basic things like home address and telephone
numbers.
It is at this stage that the patient begins to exhibit anger and suspicion and to act out all
these feelings on the caregivers, whose stress level definitely escalates. We will discuss
this aspect later in the unit.
Here the Caregivers' concerns are likely to be:
Insuring the patients security and safety.
Obtaining treatment for histher depression or agitation.
a Modifying communications with the patient to make it simple and supportive.
Creating a daily plan for structure, stimulation and socialization.
a Taking over decision making-gradually but firmly.

Fig. 2.4: Patient exhibits anger

2.4.4 The Moderately Severe and Severe Level of Alzheimer's Disease

At this stage the patient's behaviour is most likely to become a major management concem
for the caregiver as lack of awareness of surrounding, purposeless activity and psychotic
symptoms increase (Gross cognitive impairment and psychosis are apparent).

Caregivers concem are largely:

Maintaining the patients safety and security.
~ d d r e s s i htoileting
~ needs.
Maintaining patients hygiene.
Formalizing the home health care plan.
Securing equipment and supplies for the patients comfort.
Keeping the patient moving to avoid muscle contractures & deformity.
Obtaining maximum emotional and social support.
Implementing advance directives (e.g. a feeding tube)
a Considering hospitalization as a long-term care where appropriate.
 Issues in Caring

2.5 MAJOR CONCERNS RELATED TO CAREGIVERS

AND FAMILY ADJUSTMENT
A) Why address the carer's issues ?

Carer's are an investment

Carer's provide the majority of patient care inputs and the economics of the care
they provide cannot be easily measured. This is a very major saving in healthcare
cost to'the family when you compare with the cost of institutionalization.

Most people prefer "care" to be provided in their own home versus being admitted
to an institution.

Carer's are "Patients" too

Carer's health may be at risk because of their difficult and emotionally draining role
and their own health problems may be overlooked.

Carer's are Partners

Carer's are semiprofessionals; they have an important contribution to make and over
time have developed an expertize in their approach.
B) It is important that from time to time the caregiver gets not only respite but also
counselling for stress management.

1) Use of techniques like role play to increase a caregiver's awareness of hisher response
style.

2) It is important to update the caregiver's skills.

3) Build the caregiver's self-esteem and self confidence.

4) Remind the caregiver that the patient never intends to be difficult and does not
always have insight into hisher own problems.
23
Psychosocial Geriatrics You may like to use a behaviour log to help caregivers solve problems or modify their
behaviour

We need to Remember : Since the patient cannot change, it is largely the caregiver's
responsibility to adjust.

The family has to play an important role too. They have to provide an environment at
home which is conducive to the functioning of the caregiver. Family needs to be supportive
and co-operative towards the carer in order to ensure maximum positive interaction with
the patient.
In some cases it has been observed where the family is too inflexible or demanding and
the carer's have difficulty in performing their role. The caregiver has to be treated with
mutual respect and not treated as equivalent to a domestic help. This is unfortunately a
common attitude. They need to have regular timings, of course, with some flexibility to
change during the times of emergency. Overwork can affect the caregiver's physical and
mental health. Caregivers should be encouraged to voice their problems with the family
members as this relieves them of tension.

The family has to be extra careful while employing female caregivers with regard to personal
security and to ensure their safety within the family environment.

2.6 ABUSE 1 NEGLECT OF THE ELDERLY

When you as a physician find the client mentally disturbed or fretful regarding hisher
children, it could be they have genuine fears of being neglected or ignored. Here you
have to play your part of discussinglsharing with the family ways and means to tackle
these fearslsituations.
Acts of Omission or Commission:
The rights of the elderly are abused when the family does not give them adequate care
and attention, some common examples can be

1) Not taking adequate care of their feeding habits-being erratic in qualitylquantity

and timings.

2) Not taking care of their personal hygiene-clothes, bedding etc.

3) The patient may suffer from lack of timely attention with regard to toileting as when
24 helshe continues to lie in a wet bed-giving rise to bed sores.
 4) Not taking care of their physical exercise/movement to avoid the development of Issues in Caring
stiff jointsldefor~nitiesor sores.

5) No regular and proper medication. Ensuring that the patient gets regular health
check ups done and proper prescribed medication is delivered with care and not
experimenting with self prescribed medication which could create medical
complications.

6) Not spending enough time with them-just talking to them, making them feel
wanted and happy. The Human Touch is better than the Best Medicines science
can offer.

7) Not maintaining their dignity and giving them their due self respect.
\

' /' 8) Property & related disputes among the off spring where the elderly are used as
hostages to gain bargaining advantage. Overtly hostile attitudes of family members.

9) The client is made to livc in areas of the house without adequate lightinglventilation
or even access.

10) Their daily routines are extremely circumscribed leaving no room for personal
choices.

11) They are prevented from developing social contacts of their own choosing
In all the above situations your role is very important because the elderly person who
comes to you needs more understanding and sympathy. At times it may become your
responsibility to build up understanding/empathy amongst the family members towards
the elderly.

Check Your Progress

2.7 FAMILY COUNSELLING

The principle aim of family counselling is to foster the interdependence of the family
members for the benefit of both the caregiver and the patient. By sharing the caregiver's
role, they make it less stressful for himlher and allow the patient to remain comfortably
and safely at home for a longer time.

The caregiver whether a family member or a long time friend exists within the ecological
system of the family. Family counselling while important at all stages, can be strategically
beneficial at the early stages specially in the cases of dementia and Alzheimer's disease.

You as the counsellor or the physician have to perform the balancing act by reframing
from pressurizing the caregiver while conveying your optiniism and reassuring the caregiver
that you are there to support himlher.
Psychosocial Geriatrics Organizing the first meeting of family members can become a model for future problem
solving and family collaboration. There are two aspects t o this meeting :
1) Contacting family members.

2) Deciding when and where to meet.

The setting of the meeting should be private and conducive to open communication. It
can be your office, the patients or family member's home. It is important to determine the
emotional tone of the family. 1s there family affection and loyalty ? Was the patient only
feared and respected or loved also ? And other such related questions.
Families may present any of several dysfunctional patterns of communication any of
these-lengthy silences or empty chatter to cover anxiety and/or the inability either to
articulate feelings or hear what others are saying-can result in misconception and hurt
feelings. Your role is to identify blocks to effective communication and help a family
communicate in a "congruent" manner, each member saying what he or she feels.
Shared caregiving will depend upon the availability of the family members and their
motivation level. Daily care giving if divided among the members will decrease the
caregiver's stress and strain.
As a physician, you can play another important role to identify with the help of the
members, the family resources, and then throughout the treatment process. counsel how
to balance these resources with the caregiver's needs.
Potential strengths among family members include free time, willingness to help, caregiving
experiences, geographical proximity, financial resources and skills (legal, accounting etc.)
Potential limitations include, a full time workload, emotional alienation, responsibility for
smaller children, geographical distance and physical illness.
Even a supportive family network needs ongoing counsellor support.

2.8 SUPPORT GROUPS

You are now well aware that caregivers need, and deserve, ongoing support both to care
for their patient and to maintain their own well being. To further boost the caregiver's
resources, it is suggested that you recommend that, the primary caregiver. and/or family
members join other caregivers in a therapeutic group environment that is in a support
group.

Although differing in setting, structure, composition, and format, groups all have the
same goal: the well being of the caregiver and the patient.

Participation in a support group helps a caregiver emotionally socially and educationally

and thus reinforces the effect of individual and family counselling. Its social functions
especially important for caregivers who have limited interactions with family or friends.
The effect of the group experience slowly filters into a memhers life. Interpersonal relations
improve problem-solving skills increase, communications gets more direct and family
issues get resolved.

Caregivers experience a wide range of difficult emotions, which are often overwhelming
and exhausting. At one moment one may feel angry and frustrated, and the next, guilt and
sad. Too often one tries to express one's negative feelings-and thus become more
emotionally fragile and even depressed. If one attempts to share these feelings with other
people in the support group without any shame or guilt, it helps a lot.

It is quite natural for the caregivers to feel isolated as n o one has the time or the patience
to listen to their woes repeatedly-this is the time when they find, people in similar
situations, in a support group and form bonds with them.

These support groups are also the learning grounds where the different members share
their various problems and the method adopted to solve them. They are most helpful with
concrete issues like utilizing a Day Care etc.
Their personal experiences with paid home caregivers help others avert crises as well as Issues in Caring
require appropriate help at home.

On the other hand some caregivers because of their shy, and rigid personalities may not
feel inclined to join such a group and rightfully they should not be encouraged for
participation as premature joining may negate its intended function to improve coping
and adjustment.

Respite: Many caregivers are reluctant to have paid help at home for various reasons like
wanting to take care of the patient personally or due to an economic reason. The support
groups may amplify the need for a professional help.

Physicians may help where necessary to initiate and build such support groups as they
play a very important role and there is a definite need of them.

2.9 LET US SUM LIP

In this unit you have been introduced to aspects of caring-to identify the need for
special caring and how to plan the same for the individual client. You have learnt about
the constraints faced by fanlily providers and the advantages the professionalltrained
caregivcrs have over them. The importance of selecting a caregiver and the attributes
desirable in such a person have also been highlighted.

The options of institutionalization, day care and home care have been covered with the
objective of help you to decide on the right option as and when required while dealing
with such cases. The special care area has been dealt with in detail with the sole purpose
of bringing to light the seriousness of caring in cases with dementia.

The topic of abuse and neglect of the elderly is to make you aware of the different ways
in which the elderly can face neglect and abuse in their own home environment, at the
hands of their own offspring or other family members.

Family counselling and support groups along with counselling for caregivers turns your
focus on the need for respite for the care providers-to deal with their stress and give
them an opportunity to open up and express their fears/problcms to you as their physician/
counsellor.

We hope this unit helps you to better understand various issues in caring for the elderly
who have special needs.

2.10 KEY WORDS

Alzheimer's disease : It is a primary degenerative cerebral disease of unknown
etiology with characteristic neuropathological a n d
neurochemical features.

Parkinsonism : A hypokinetic disorder characterized by rest tremors, pill

rolling movement, brady kinesia, rigidity and postural
instability. 27
Psychosocial Geriatrics
2.11 ANSWERS TO CHECK YOUR PROGRESS
Check Your Progress 1
1) Individual

2) Dementia, Parkinson, Alzheimer

3) Maturity, sincerity, sense of humor

4) Take blood pressure, help with exercises, check and prevent bed sores

5) Institutionalization, day care, home care

6) In home care, the patient is in familiar surroundings and feels very much at ease
mentally.

Check Your Progress 2

1) Alzheimer's disease are the most notiable outward signs in a patient in initial stage
is losing train of thought, word or expression, forgetting names and misplacing an
important item.

2) The there major concerns of caregivers are:

0 Maintaining the patients safety and security
0 Keeping the patient moving to avoid muscle contractures and deformity.
0 Formalizing the home health care plan.

3) Thought process, judgement, decision making.

4) Safety, avoiding anxiety proofing situations.

Check Your Progress 3

1) It is important to address the care issues because:

a) Carer's are partners and provide the majority of palienl care inputs.

b) They are sen~iprofessionalswith an expertize.

b) The economics of the care they provide cannot be easily measured.

2) Role of family in this set up is that the family

a) Provides conducive environment at home, for the caregiver.

b) Needs to be supportive and co-operative towards the carer.

C) Should treat the caregiver with respect and consideration.

Check Your Progress 4

1) Three examples where there is abuselneglect of elderly are: Lack of proper diet,
ignoring personal hygiene, denying them their legal rights.

2) Our role as a physician looking after the elderly is to build up understanding and
empathy amongst the family members towards the elderly.

Check Your Progress 6

The main idea for forming support groups is to boost the caregivers resources and offer
emotional, social and educational support in a therapeutic group environment.