Tips For Those New to Caregiving

By Swapna Kishore*

Fifteen years ago, my father collapsed while getting up from a chair. A few hours later, instead of editing a document I had to submit to a client, I was trying to figure out how to look after someone bed-ridden thanks to a hip fracture. I assumed then that the situation was temporary, but as days, weeks, and months went by, my life kept changing to accommodate caregiving - first for my father, who never quite recovered, and then for my mother, who has dementia.

My caregiving journey is dotted with successes and failures, days of fulfillment and days frustration. I've been sharing my experiences through my blog and website, and at support group meetings. Some days ago, a friend asked me to jot down suggestions for people newly thrust into the role of caregiving. Here is what I think …

Most of us have very little idea of the intensity involved in extended caregiving. We may have looked after someone with a fever, or spent a week or so supporting someone recovering from a surgery, but that is quite different from caring for a person suffering from a serious or disabling condition such as late-stage cancer, cerebral palsy, dementia, or organ failure. We may not have imagined ourselves (given our gender/ qualification/skills/ good luck) as persons who may need to provide such care.

The patient may be a loved one, or an acquaintance, or someone we have to care for because there is no one else to do so. The illness may be curable or one with a low chance of recovery, the duration may be a few months or may stretch across years. Whatever the case, this new responsibility may leave us feeling strange - uncertain, nervous, helpless, exhausted, sad, angry and often alone.

In this note, I am sharing things I wish I had known when I had just assumed the caregiving responsibility.  

But before going any further, one important point: we have to understand that caregiving is a role. Caregiving will affect us in multiple ways. We need to understand what it involves and plan for it rather than assume and hope things will sort of fit in with what we are currently doing. Like many other roles we balance - as a professional, spouse, parent, child - the caregiving role has to be integrated into our life. In order to be effective caregivers, we must have a realistic idea of the time, energy and money this role involves, and balance it with our jobs and family, our hobbies, socializing, and sleep …

Over, now, to my suggestions for effective and less stressful caregiving. I will start by discussing the functional (planning and execution of caregiving activities) aspects and then move over to the emotional and other adjustments that can help us.

Understand the Disease. We need to understand the basics of the disease and the treatment so that we can provide the necessary care and recognize and handle emergencies. While we don't need to become doctors or nurses, we have to acquire skills relevant for our situation. It is important to understand the medications and their possible side-effects, symptoms to watch out for, and when to call the doctor. First aid knowledge can also be very useful. For bedridden patients, we need to learn home nursing (such as, how to change a soiled sheet or recognize and prevent pressure sores). We can consult support groups, other caregivers, and doctors to understand which topics are relevant, and to get the required information. And read books and watch training videos. While doctors are good resources, it is our responsibility to ask them the right questions and get any clarifications.

Set up systems for calling doctors and others to help:  Patients may require frequent trips to various clinics and hospitals. We need to plan how to transport the patient, and also be ready for emergencies. For example, a first aid box at home is a must. We should have ready access to important phone numbers, such as the numbers of ambulance services, doctors who do home visits, home nursing agencies, chemists who deliver drugs at home, and relatives and friends we can contact when we face a problem. It helps to mentally run through scenarios of possible problems so as to decide what to plan for.

Understand what the patient wants, and how much the patient can be involved:  In some diseases, patients remain alert enough to take decisions regarding their treatments and surgery. However, in many cases, the patient is not in a position to understand the options and make decisions. For example, the person could be suffering from advanced dementia, or could be in a coma. In such cases, caregivers have to make decisions on behalf of the patient. It always helps if we understand what the patient wants / would have wanted. Open discussions can be held with the patient, if possible. We can also try to find out if the patient has communicated his/ her desires earlier.

Coordinate across multiple stakeholders:  As caregivers who assume decision-making and responsibility, we may forget to involve other family members living at a distance, and this can lead to hurt and bitterness and disagreements. We must accept and remember that family members living in other cities/ countries may feel worried and concerned, and may want to be involved in caregiving. Also, caregiving gets overwhelming with time, and having the support and participation of others is useful. Others are more likely to be able to support us if we keep them informed and discuss our decisions with them (even though we may find it difficult and consider it a waste of time). We don't have to satisfy everyone or put up with criticism or blame-games - we can firmly put down any unproductive comments - but we should also not discard everything others say just because they are unable to participate in the day-to-day care.

Redesign Life to include the Caregiving Role:  Depending on the type and duration of the care required, we will need to make minor or major adjustments to free up enough time, energy, and money. Jobs may be shifted to flexi-time. Travel may be reduced and work-from-home packages opted for. We may have to move into the patient's home or schedule frequent visits. If the patient requires intense care and cannot be left alone, we may be confined to the house most of the time and therefore need to plan better for outside activities like bank visits, ATM withdrawals, and shopping for groceries and vegetables. Socializing and vacations could become difficult.

Decide 'pacing' and see whether we need assistance: Often, anxious caregivers try to do too much, and then burn out and collapse. For example, we may try to sit near the patient and stay awake all the time, and soon be too sleep-backlogged to manage the care. It is impossible for any caregiver, howsoever well-intentioned, to provide intense care on a continuous basis. Every caregiving situation is characterized by the intensity of care required, type of care, and duration - we must understand this and set realistic goals and expectations. For patients with acute conditions, we may need to request others for help and employ home nurses. On the other hand, some patients do not require such heavy care, but the illness is a long-drawn one, likely to span months, even years. Caregiving such marathon-care cases at a sprint pace will result in burnout.

Recognize the emotional demands of caregiving:  Most of us find it depressing and frustrating to care for someone who is severely ill, especially if the patient's condition gets progressively worsen despite our efforts. We are emotionally affected if we love the patient because of our sense of helplessness and loss. Even if we are not emotionally attached to the patient, we get affected seeing the impact of the illness. Sometimes, we may have unresolved issues with the patient, and this creates resentment when we need to keep adjusting our lives to care for this person. The range of emotions caregiving induces varies from guilt and deep sorrow and fatigue to anger and frustration. We must understand that this is normal for caregivers, and not blame ourselves for these feelings.

Recognize that there will be bad days:  On some days, caregiving is fulfilling because the patient shows improvement, or he/ she smiles at us and thanks us. On other days, the patient worsens, or is cranky and blames us or complains to others or gets agitated, and life seems just so pointless. We have been working very hard, and this discourages us.

What we must remember is:  A patient feeling worse on some days is not our fault; it is the nature of the disease.

Recognize that people may not understand/appreciate our role:  Sometimes others (those not providing care) do not understand our situation and may say something insensitive, complain, criticize, or blame. Even close family members may make hurtful remarks because they feel neglected or suspect that we are over reacting to the situation / exaggerating problems. That is not really surprising, because till we became caregivers, we too, did not fully appreciate other caregivers. We should explain the situation calmly if we can, or excuse ourselves and walk away instead of exploding, because that always makes everyone feel worse.  Making others assist us in some activities may also sensitize them to what caregiving is.

Use support groups and various facilities available: Caregivers, busy with fatiguing work, often get socially isolated and feel they have nothing in common with old friends.  Support groups are very effective in reducing loneliness, as are online communities. We should also consider employing attendants and home nurses, availing day care facilities, or taking a vacation by using respite care. If balancing caregiving with our other roles proves impossible, we can consider options like moving the patient to a long-term care facility or hospice. Counselors can discuss the pros and cons for such steps.

Nurture oneself:  Fatigued caregivers often neglect their own health and well-being, and suffer from episodes of caregiver stress. But in order to take good care of the patient, we must remain healthy and cheerful ourselves. For this, we must take time to indulge in whatever relaxes us: walks, music, a good book, painting, maybe an outing with a friend. We must eat nutritious food and remain physically active. Yoga and meditation also contribute to health and well-being. Even so, some days are especially stressful, and we must recognize when we are feeling stressed so that we can call for help in time.

On a final note:   As caregivers, we will face good days and bad.

Caring for someone may bring us heart-warming moments when the patient flashes a smile at us, or show that he/she knows that we care, or when friends and relatives appreciate our effort. These are memories we can cherish and use to tide over days which don't go that well.

When we are emotionally distressed by the caregiving work, or fatigued, or when we feel isolated, and when people around us ignore us, take us for granted, or criticize us instead of appreciating us - at such times, we can think of the fulfilling moments we have experienced. We can remind ourselves that caring for people is important. Definitely, we would like to be cared for when we need it, as will every person we know. We are multi-faceted persons performing a very necessary role, the role of caring, and we can appreciate ourselves even if others do not.

_____________________________________________________________________________________________

* © Swapna Kishore, 2011.

This work is released under a Creative Commons License CC-BY-NC-SA. You can use it (or its

derivatives) for non-commercial purposes so long as you include the copyright attribution @Swapna

Kishore. For further information go to http://creativecommons.org/licenses/by-nc-sa/3.0/ For uses outside the scope of the license, contact Swapna Kishore at cyber.swapnakishore@gmail.com

3 WAYS TO GET AN ALZHEIMER'S PATIENT TO EAT MORE

(Tips from Bob DeMarco, Alzheimer's Reading Room)

As Alzheimer's or dementia progresses getting a patient to eat a nutritious meal, or to eat enough, can become a problem.

There is a long list of potential problems that cause dementia patients to eat less. There are also many ways that can be tried to deal with or eliminate the problem.

The most important factor in this wide spread problem is in fact, the color of the plate.

Last week I spoke at an Alzheimer's Conference in New York. I was asked several times,

"How can I get my mother to eat more food? Or, she just won't eat what can I do?".

When I started answering at the conference, the entire audience of over 200 people seemed shocked and surprised at my number one suggestion below.

This told me that we need to work harder on getting families into support groups and discussing the most common problems we face in the Alzheimer's dementia community.

As Alzheimer's or dementia progresses, getting a patient to eat a nutritious meal, or to eat enough, can become a problem.

This can cause the Alzheimer's caregiver to become frustrated, confused, and even angry. It can also bring on feelings of sadness and hopelessness.

1.   The First Question I Always Ask is - What Color are Your Plates?

In a study conducted at Boston University, Researchers found that patients eating from RED PLATES consumed 25 percent more food than those eating from white plates. Solid red plates, no pattern embedded.

Before you go, let me ask you this simple question?  Are you sure an Alzheimer's patient can see the food on the plate?  Meaning, see it is a way that you and I do, and then eat it.

Many caregivers understand that as dementia progresses vision and spatial problems can affect the ability of Alzheimer's patients to do things. For example, my mother would often stop walking when she reached an area of white tile in our home. It was almost like there was an in visible fence. I often wondered why. Interesting when she was going in the other direction - from white tile to blue carpet she never stopped.

Are you using white plates when you feed your loved one? If so, consider RED PLATES.

Interestingly, one day while I was watching the Dr. OZ television show a Nutritionist he had on the show said -- "don't eat off red plates because you will eat more".

2. Make eye contact while eating.

Sit directly in front of your loved one living with dementia and make eye contact while eating.

Smile and wait for them to smile back at you.

Then start eating without talking (you start eating).  Keep quiet.

Be patient, very very patient, keep making eye contact, and wait for them to follow your lead.

Be patient are the key words here. You might have to do this for a while before it starts working. Remember, you are trying to break a bad pattern and replace with a good pattern.

3. Did I Say Keep Your Mouth Shut?

Trying to convince a person living with Alzheimer's, if they are at the point of not eating, that they must eat is counterproductive to your effort.

Trying to explain why they need to eat is counterproductive.

The proper mind set here is learning to be a guide. A good guide makes eye contact and smiles.

A good guide demonstrates how to eat each and every time (like it is the first time, every time). The good guide does this with a smile on their face.

One thing you will need to consider is if the person living with dementia is unable to eat - they might find it difficult, painful, or impossible to swallow. You should discuss this issue with a qualified specialist. Specialist means a person or doctor that actually deals with this problem - all the time.

Hopefully, by guiding rather than cajoling you might get a patient to eat just enough.

(Source:  Bob DeMarco, Alzheimer’s Reading Room)

SAT/23NOV13 ADFM Public Seminar "DEMENTIA CARE" By Ms Lynda McNab, Sponsored By CIMB Foundation

                        

  

ALZHEIMER’S DISEASE FOUNDATION MALAYSIA (ADFM)

Public Seminar For Caregivers, Healthcare Professionals/Workers  

“Dementia Care”

Speaker: Ms Lynda McNab, Clinical Nurse Specialist, UK

Date:  Saturday, 23 November 2013

Time: 9.00a.m. to 1.00 p.m.
Venue:  Hall 3, Graduate Centre, Ground Floor, Sunway University

No. 5 Jalan Universiti, Bandar Sunway, 46150 Petaling Jaya

PROGRAM

08.00am   Registration of Attendance  & Light Refreshment

09.00am Welcome Address by Datuk Dr Yim Khai Kee, Chairman, ADFM Exco

09.05am “Overview of Dementia” by  Dr Lu Ann Chong, Consultant Psychogeriatrician

• What is dementia?
• Why is it important to get a diagnosis?
• The use on antipsychotic medication
• Memory clinics – what are they and how to gain access
• Services in the UK vs services in Malaysia

09.40am    Living Well with Dementia” by Ms Lynda McNab, Clinical Nurse Specialist, UK

• Giving hope
• Empowerment
• Caregiver support groups
• Working with people in the later stages of dementia – small video

10.30am Break for Refreshment

10.45am “Behaviour That Challenges” by Ms Lynda McNab, Clinical Nurse Specialist, UK

• Definition – what is behaviour that challenges
• Attitudes – who does it challenge?
• Why do PWD wander, what can we do?
• Why do PWD become aggressive, shout or swear? What can we do?
• Why do PWD have sleep difficulties? What can we do?
• Why do PWD refuse to eat? What can we do?
• Why do PWD not allow personal care to take place? What can we do?
• The focus of this will be looking at non pharmacological measure to work with these behaviours

12.00pm   Questions and Answers

01.00pm   End  

Who Should Attend?

Caregivers, Healthcare Professionals & Workers from Healthcare Sector.

REGISTRATION FEE 

RM10 per person (defray expenditure for refreshments & Certificate of Attendance).

COMPULSORY REGISTRATION (On First-Come, First-Served Basis)

1.   Register online now -> RegistrationForm

2.   Email: jenny@adfm.org.my  OR  Fax:  03 7960 8482

Further details, call Jenny at  016 608 2513 / 03 7931 5850 (DL) / 7956 2008

A Community Project  sponsored by CIMB Foundation, organized by Alzheimer’s Disease Foundation Malaysia (ADFM), and supported by Sunway University

Are you a Caregiver?  Join the ADFM National Caregivers Network (An Online Platform  provides resource and support for the caregivers community in Malaysia, to seek information, learn how to understand, cope and communicate with a person living with Alzheimer’s and other form of Dementia.  The Network Support Group holds monthly talk & Caregivers Sharing Section.)

SIGN UP at : http://admalaysia.ning.com/main/authorization/signUp

WHAT IS DEMENTIA ?

DEMENTIA, simply put, is a group of symptoms associated with a progressive loss of brain functioning. The word “dementia” comes from “de” (without) and “mentia” (mind). 

          

DEMENTIA occurs because of diseases that affect the patient’s brain. Because the brain controls every function of our body, dementia patients have problems doing various tasks of daily life.

Patients may face memory loss, which increases as their dementia progresses. They may find it difficult to balance their bank statements or plan for visitors at home. Sometimes, they forget where they are (which house, which city) or the date and time. They may struggle to find the right words to explain what they want. They may show major personality changes, apathy, and socially inappropriate behaviour. Over time, they become unable to do the normal activities we all take for granted, and could have problems walking, talking, and swallowing food. In the final stage, they become fully dependent and are prone to serious complications such as pneumonia, infection, bedsores, multi-organ failure, and so on.

To people around them–their family, friends, colleagues, neighbours - Dementia Patients look confused and forgetful and/or start behaving strangely, such as withdrawing or getting aggressive or showing disinhibition. Many of these symptoms are often assumed to be part of normal ageing; but dementia is not normal ageing. Sometimes, especially when the patients are young and show behaviour changes (but don’t have memory loss), the symptoms may be mistaken as a psychiatric problem or even ignored as “stubbornness” or “bad character”.

On this page are:

• Examples of dementia symptoms
• The memory loss in dementia is different from normal memory problems we all face
• Dementia is not the same as normal old age
• While older people are more likely to get dementia, people in their 30s, 40s, and 50s can also get dementia
• Memory loss may not be an initial symptom in a person with dementia

Examples of Dementia Symptoms:

Patients may show some or most of the following symptoms (the number and intensity of the symptoms increases as dementia progresses):

• Forgetting important things, especially recent things
• Finding it difficult to plan events or solve problems                                                                 
• Normal, daily activities seem more difficult to do                                                       
• Wearing wrong / inappropriate clothes, or becoming untidy
• Getting confused about which day, month or year it is, or where the person is
• Having problems with pictures
• Having problems with numbers
• Using wrong words while speaking or writing
• Putting things at very unsuitable places (like putting a file in the fridge)
• Starting something, and then being unable to remember what they wanted to do, even after trying a lot
• Taking strange decisions about investments
• No longer understanding the value of money
• Behaving in socially inappropriate ways, taking off clothes, using abusive language
• Withdrawing socially
• Getting agitated for minor things or for no apparent reason at all
• Getting violent
• Becoming apathetic about what others feel
• Seeming suspicious about people

A useful reference to understand dementia symptoms is  10 Sign's of Alzheimer's from Alzheimer’s Association. This document describes each symptom and also explains how to distinguish between ‘normal ageing’ and dementia.

It is also useful to check the description of symptoms of fronto-temporal dementias, a group of dementias that involve the frontal and temporal lobes of the brain , and account for 5-10% of the cases (with a larger proportion being young onset cases). Check the Mayo Clinic pages and the AFTD site.

The memory loss in dementia is different from normal memory problems we all face.

A lot of people associate the word dementia with “memory loss”.  They also get worried every time they forget something, scared that they have dementia. But not every misplaced key or forgotten date indicates dementia. Many of us forget things occasionally, but this is different from the “memory loss” associated with dementia.  

In the early stages, patients often manage to cover up or compensate for memory loss. And even if they seem confused, people around them assume that this was a “normal” loss. To realize something is wrong, the family needs to be more alert.

As dementia progresses, however, the problem becomes more obvious. 

Understanding Memory Loss , a document at ADEAR, explains memory loss, and which types of memory loss are part of dementia. It also gives tips on how to handle memory loss. The document, while reassuring us that some memory loss is normal as we age, also reiterates: If you’re worried about your forgetfulness, see your doctor (Geriatrician).

In early stages, patients hide their confusion. 

DEMENTIA IS NOT THE SAME AS NORMAL AGE

Often, patients and their families ignore early symptoms of dementia, because they mistake these for old age. This confusion is worsened by language, where old age and senility are assumed as linked.  To top it all, the term “senile dementia” and “pre-senile dementia” are still used by some of the older doctors, linking “senile” with “dementia”.

But dementia is not just a faster case of ageing. It is usually caused by distinct changes in the brain, such as damage to brain cells. The symptoms are not just an exaggerated case of old age, and dementia may also occur in younger persons (see below).

Another confusion is that people think dementia is inevitable with age. It is not. Not everyone who grows old gets dementia. While the probability of getting dementia increases as one ages (more old people get dementia as compared to younger people), dementia is not a part of normal ageing, and it is NOT inevitable.

While older people are more likely to get dementia, people in their 30s, 40s, and 50s can also get dementia.

Most people think that only elderly persons get dementia. But while the probability of getting dementia increases with age, people can get dementia at younger ages, too. When someone who gets dementia is less than 65 years old, it is called younger onset dementia (also called young onset dementia or early onset dementia). Because of the general notion that dementia is an old age disease, when younger persons experience the symptoms, they do not seek support. Doctors, too, may ignore the symptoms or ignore dementia diseases as a possible cause; they may misdiagnose the problems as psychiatric disorders or other problems instead.

The WHO Report, Dementia, a Public Health Priority, states that (YOD stands for Younger Onset Dementia) “While it was estimated that YOD accounts for only 2.2% of all people with dementia in the United Kingdom, the true proportion may be closer to 6–9%.” This is a fairly significant proportion of the dementia population.

MEMORY LOSS may not be an initial symptom in a person with dementia.

There are many symptoms of dementia. Also, dementia may be caused by several diseases. Though memory loss is a prominent feature in the initial stages of some forms of dementia, it is not an initial symptom in some other forms of dementia. For example, in fronto-temporal dementias, the typical initial symptoms are personality changes like disinhibition and loss of restraint, inability to use appropriate words and having a halting speech, problems in walking and balance, etc. Persons suffering from this type of dementia may exhibit no memory loss.

(Source:  Dementia Care Notes)

HOW DEMENTIA IMPACTS BEHAVIOUR

In the initial stages, patients appear so normal that people around them forget that they are suffering from a disease that has affected their brain. While theoretically people know that the patients have a disease, they do not correlate the apparently inconsistent or inconsiderate behaviour of the patients with the disease. Caregivers may assume that the patient is being uncooperative or stubborn or just not trying hard enough, and therefore get irritated or sad or angry. Patients sense this emotion and this, too, affects their behavior.

The intention of this page is to give caregivers some idea on how behavior is impacted by problems that dementia patients facing.  It is by no means an exhaustive list; it only aims to help caregivers orientate themselves to dementia behavior so that they set realistic expectations and can think of ways to handle behaviors that could harm the patient and others around them. 

• The brain gets damaged in dementia
• How dementia affects the ability to do things
• How dementia affects the emotional state of the patient
• What caregivers can remember about dementia behaviour

In order to see how dementia affects behaviour, we need to understand that the diseases that cause dementia affect the brain, and that the patient’s problems occur because of these organic changes to the brain.

The brain is a very complex organ, with billions of cells (neurons) that communicate with each other so that we can do things. Different parts of the brain perform different tasks. Dementing diseases affect the brain. The parts of the brain affected, and how the damage increases over time, depends on the disease causing the dementia. Image on left courtesy of : National Institute on Aging/National Institutes of Health

The damage to the brain increases as dementia progresses. The damage may become more severe, and more areas of the brain may also get damaged.

To illustrate the increasing damage to the brain, the image panel below uses images of brains of patients with Alzheimer’s Disease, the leading cause of dementia (Coutesy of National Institute on Aging/National Institutes of Health).

Images showing Pre-clinical Alzheimer’s Disease, Mild Alzheimer’s Disease and Severe Alzheimer’s Disease

   

   

HOW DEMENTIA AFFECTS THE ABILITY TO DO THINGS:

	Explanation	Impact on behaviour
Image courtesy: National Institute on Aging/National Institutes of Health	Different patients have damage in different parts of the brain. When the disease progresses, it may affect different parts in different people.	Different patients will face different types of problems. For example, some may have more problems walking, while others may have more problems while speaking. Over time, the patient’s ability to do things will get worse.
Image courtesy: National Institute on Aging/National Institutes of Health	As dementia progresses, the damage to the brain increases. More areas of the brain may get impacted.	Visible symptoms increase depending on the areas of the brain affected, and the severity of the damage. As more and more parts of the brain are impacted, the patient’s ability to perform activities of daily living keeps decreasing. Communication is often impacted. Memory loss is common in many types of dementia. Major personality changes are seen in some types of dementia. There is an overall deterioration. In the final stages, the patient is fully dependent and often unable to communicate.
	Every task we do has multiple steps. Inability to do any step results in inability to complete a task.	If the dementing disease has affected the patient’s ability to do part of a task, the patient will not be able to do that task independently and will need assistance.
	Every task requires coordination of various parts of our body and the ability to pay attention. Multiple parts of the brain have to function properly to perform this. For example, to light the gas stove, we need to position the lighter near the burner and click its button at the exact moment that we turn the corresponding knob of the gas stove. As dementia progresses, at least some parts of the brain required for this coordination and focus are likely to be damaged.	Patients will no longer be able to do complex tasks that require precision and coordination. Attempts to do such tasks are likely to lead to frustration or accidents.
	All of us have some fluctuation in our abilities over days, depending on our mood and health and energy. In dementia patients, we often find fluctuations in the abilities to do a specific task or remember something. Fluctuations in cognitive ability are particularly common in Lewy Body Dementia	To persons interacting with dementia patients, it seems strange to see the person able to remember something on one day, and not be able to remember it later. When they see the patient do something on one day and not be able to do it the very next day, people begin thinking the person is not trying hard enough. It is helpful to know that such fluctuations may be characteristic of their dementia.
	Often, patients get disoriented because of problems like loss of memories, visio-spatial problems, discomfort with too much stimulus or noise, inability to understand objects around them, etc.	This leads to multiple problems, such as The patient may wander and forget the way back home. The patient may consider himself/ herself as younger and expect a different home, and may not recognize the children and grandchildren, or mistake the daughter for the wife. The patient may keep insisting he/ she wants to go home. The patient may be anxious about not knowing where the toilet is.
	Patients often cannot communicate what they want. They may have problems remembering the right word, or may not know the meaning of words others use. They may not be able to frame sentences. Patients may also have problems knowing what they are feeling; they may not realize they are hungry or thirsty or hot or cold, or even that they are unwell or in pain.	They may not be able to tell caregivers what they want. They may not be able to indicate that they are unwell or are in pain. So their needs remain unfulfilled. This may also frustrate, distress, or anger them, even if they don’t know how to express it. If they are ill, their illness will affect their ability to do things, but caregivers may not understand  why the patient is acting differently today. Also, the caregiver may not realize that the patient needs rest/ treatment.
	In many types of dementia, recent memories are lost, and patients often revert to older memories, or (unconsciously) try to fill gaps in their memories using their imagination.	Patients cannot recognize people or places, and may not even recognize their home and family.
	Often, patients are unable to create new memories. They may also have problems understanding complex instructions or concepts.	This affects their ability to learn new things, use new devices, and adjust to new places. They may also get stressed when they meet new persons or see new things, and start avoiding such situations.
	In many types of dementia, the part of the brain that tells people how to interact socially is not damaged initially. This social interaction ability deteriorates at a slower pace in most patients.	Patients may cover up for memory loss and other problems by giving evasive answers, thus masking the problem in the presence of guests.
	In some types of dementia, people become disinhibited or are unable to behave in socially correct ways because the part of the brain that regulates behavior is damaged. The patient’s personality changes. Emotions may also get flattened and the patient may show apathy. Such problems are typical in behavior-variant fronto-temporal dementia.	Often, this leads to embarrassing situations where people may assume the patient has “bad character” or is inconsiderate and insensitive. For example, the patient may made rude remarks (even sexual comments), yell or abuse. Or the patient may laugh when others are crying. Or the patient may lose interest in everything and not show any reaction to emotions of persons nearby.
	In some forms of dementia, notably Lewy Body Dementia, patients may suffer from hallucinations. Delusions and paranoia are also present in some forms of dementia	Patients who hallucinate may sometimes realize they are hallucinating, but at other times, they may be confused or frightened because they believe what they are seeing or hearing. Hallucinations may make familiar tasks difficult when they cannot distinguish between reality and hallucination (for example, if they see a road split into four, they cannot drive). People near them may not realize that the patient is hallucinating and hence confused/ frightened. Delusions and paranoia also affect how the patient interacts with others. They may accuse people of stealing their possessions or even of trying to kill them. It is difficult to make the patient understand what is real and what is delusion, or to calm down a paranoid patient.
	Repetitive behavior and compulsive behavior are common in many forms of dementia. (this is also called ‘perseveration’). Such behavior may occur for many reasons, such as forgetting having said or done the thing earlier, boredom, anxiety, agitation, etc.	Common examples are the patient may say the same thing repeatedly, ask the same question, make the same gesture, do the same action, etcetera. Often, such repetitive behavior is harmless, but at times it may be problematic (like the patient insisting on eating breakfast multiple times) or even harmful (taking medication mutliple times) or exhausting (such as packing/ unpacking a suitcase or pacing). It can also be annoying or distressing for caregivers if they don’t understand it is happening because of dementia and don’t know how to cope with it.
	In many instances, dementia patients show changed behavior in the evenings/ night, called “sundowning”. While causes for such behavior are not fully understood, they are expected to be related to day time activities, exhaustion, body clock, food cycles, intake of liquid foods near dinner time, and so on.	Patients start acting agitated as evening approaches. They may be restless and start pacing. They may seem more agitated and anxious. Sleeplessness is another problem. They may walk up and down all night, mumbling or even shouting at times. All this can be very tiring for the patients and their caregivers.

HOW DEMENTIA AFFECTS THE EMOTIONAL STATE OF THE PATIENTS 

Dementia impacts the emotions of patients in multiple ways.

Some parts of the brain are responsible for processing and regulating emotions. If dementia has damaged these parts of the brain, the patient’s ability to regulate emotions is reduced. Also, parts of the brain are responsible for interpreting facial expressions to understand the emotions of others; damage to these parts will mean the patient may not know what others are feeling. Due to such problems, dementia patients may therefore seem apathetic or emotionally “flat.”

We behave in socially appropriate ways because our brain controls our behavior and emotions. Without such control, people may yell or abuse, or laugh loudly or cry at inappropriate times, or behave in disinhibited ways, like taking off clothes in public or passing vulgar comments. Such behavior is a characteristic of some types of dementia, where the frontal lobe has been damaged.

The patient’s emotions may also be affected because the patients sense their reduced cognitive abilities, such as in areas like in thinking, recognizing, speaking, doing things and so on, but they do not understand what is wrong with them (they do not understand or remember their own diagnosis). They feel a loss of identity, and are disoriented, bewildered and confused about what is happening. Because of this, they may experience emotions ranging from withdrawal and depression to anger and agitation. They may get restless or anxious.

Lost memories mean that the patient may not remember where he or she kept something, and this may create suspicion and paranoia. Not remembering that they have eaten recently may make them demand food repeatedly or complain that they are being starved. Complaining to others that they are being mistreated is common in many patients, and occurs because patients cannot remember that they have been looked after and fed. Disorientation to time and place may make them behave in uninhibited and socially unacceptable ways.

Sometimes, the patient slips into what is called “catastrophic behaviour.” This happens when the patient’s agitation and frustration crosses a threshold and the patient is out of control. It is very difficult to placate or control a patient once he / she slips into such behaviour, especially because the brain’s ability to regulate emotions may also have been affected by dementia.

A good way to truly understand how dementia affects people is to pause to think what it could be like to suffer from dementia.

Some patients have written about their experiences and feelings, and described their problems, confusion, frustration, and reduction in abilities. Their relief at learning that their problems were because of a medical problem. In their personal stories, they have talked of their determination on some days, and despair on others, and their attempts to live as normally as they could, though the usual “normal” did not apply to them. Note that these are all accounts written by persons diagnosed relatively early, and who have not progressed to the advanced stages of dementia.

Now, let us imagine that we undergo such experiences without the benefit of a diagnosis. Let us imagine not knowing where we are or what day and time it is, unable to recognize people or find the correct word, not sure what we were trying to do. Imagine wondering what is going wrong, but too scared and perhaps ashamed to admit the problems or ask for help.

While no one can fully comprehend what it must be like to have one’s own mind so confused and undependable at times, and also face so many difficulties in making the body do what the person wants, some persons have used devices to give caregivers a glimpse of what living with dementia may involve. A youtube video that describes such an sensitization experiment can be viewed at this link: Experience 12 Minutes In Alzheimer’s Dementia.

Dementia awareness in most countries is very poor. This means persons who face problems similar to those described in the above personal stories do not get diagnosed, and they and their families expect “normal” behaviour all the time. By the time the situation is bad enough for everyone to consider consulting a doctor, chances are that the patient can no longer understand explanations about dementia or remember them. The concept of “Alzheimer’s Disease” or other form of Dementia is new to the patient, who may not grasp it or remember it, and may continue to feel scared or ashamed. This surely worsens the stress and further makes things difficult for the patient.

Our understanding of what patients undergo may help us appreciate why they get agitated or depressed, and we may find the strength and empathy to help them.

WHAT CAREGIVERS CAN REMEMBER ABOUT DEMENTIA BEHAVIOUR:

• The patient’s brain has suffered a damage. Just because we cannot see the damage does not make it less real. We accept that a heart patient cannot lift heavy weights; a dementia patient cannot think and remember.
• Most of us assume that people act out of clear reasons and motives. That is, if someone said something nasty, we assume he meant it. We cannot assume that dementia patients are acting out of intention, because they cannot think clearly, and do not have a logical reason for their behavior.
• Dementia patients are not acting difficult because they want to trouble us (even if it seems so to us). They are acting difficult because their brains are not cooperating with them. If our brains were damaged, we would find things more difficult, too.
• If a dementia patient is acting strange on a particular day, it could be because of a problem the patient cannot tell us.
• If a patient gets upset and emotional, it is because the patient is frustrated and cannot handle a situation. We can use their emotion as an indication that they need help, rather than get upset about it.
• If a patient is behaving in a socially inappropriate way, or showing apathy, that may be because some part of his/ her brain is damaged. After all, emotions are generated and regulated in the brain so a damage in the brain can affect emotions.
• Our brains are working properly; if we cannot understand what the patient is doing, how can we expect the patient (whose brain has problems) to understand us?
• We need to learn tools to communicate with patients and to help them with various tasks.  We need to learn how to handle challenging behavior. The patients cannot learn new things; it is for us to learn how to cope with the situation.

 (Source:  Dementia Care Notes)