Schedule of activities - Web viewPARTICIPANT GUIDE. For. mhGAP-IG Base course training. Dementia....

PARTICIPANT GUIDE For mhGAP-IG Base course trainingDementia

Module Overview

Dementia is large and growing problem in many countries. It is often undiagnosed because the early stages are mistakenly thought to be a normal part of ageing. Dementia is not a normal part of ageing and there is no cure. The lives of people with dementia and the lives of their families can be greatly improved through appropriate care in non-specialist healthcare settings.

This module includes information for identifying, assessing and managing dementia.

Table of contents

Module overview

Schedule of activities.....................................................................................2

Learning objectives........................................................................................2

Key messages.................................................................................................2

Training instructions......................................................................................2

Hand outs.......................................................................................................4

Session Slides...............................................................................................13

DEM-1

Schedule of activities A. Introduction 15 minB. Learning objectivesC. Key actions

1. Establish communication and build trust 5 min2. Conduct assessment 50 min3. Plan and start management 10 min4. Link with other services and supports 5 min5. Follow up 5 min

Total 1.5 hours

Learning objectives To be able to suspect dementia in older people. To be able to assess for and manage behavioural and psychological

symptoms of dementia. To be able to assess and support the carers needs. To understand the need for referral to a specialist. To be able to follow up appropriately.

K ey messages Dementia is not a normal part of ageing. It is critical to assess the carer’s strain and provide psychosocial

support to address it. There is much that can be done to improve symptoms and the living

situation. You must assess for and manage behavioural and psychological

symptoms of the person with dementia.

Training instruction s Role play: Assessment (slide 36)Situation:• Farrah, 45-years-old, brings her mother Ingrid, 73 years old, to your

clinic.

DEM-2

• Farrah reports that her mother has been acting strangely over the last few months.

• Her mother has become increasingly forgetful and vague.• Sometimes she doesn't seem to recognize people that she has known

for years.• Assess Ingrid for possible dementia by speaking with Farrah.• Also assess Farrah's well-being.

Instructions: The facilitator will play the role of Farrah (caregiver of person with

dementia) Each participant will ask questions (in turn) to the facilitator for

suspecting dementia in Farrah's mother and also to assess carer strain and care arrangement.

DEM-3

Hand outs Hand out for slide 42

Managing common behavioural problems of dementia

1. Personal Hygiene

The amount of help a person with dementia needs in personal care varies with the extent of the brain damage. The person with dementia will be able to care for himself in the early stages of the disease, but may gradually begin to neglect himself and will eventually need total help.

Dressing and bathing are personal activities. We each have our own individual ways of doing things. Some change the clothes twice a day, some every other day, thus each of us is quite set in our habits. If a family member has to help he/she may overlook these personal habits. Taking a bath by oneself is a sign of independence, and it is a private activity, so suddenly if someone has to help the person to bath and change clothes it can be very upsetting.

People with dementia can become abusive and non-cooperative, unaware that the carer is only trying to keep them clean. Look for ways to simplify the number of decisions involved in bathing and dressing without taking away their independence.

Suggestions: Try to know how they like to take a bath (type of soap, warm or cold

water, time of the day etc) While bathing allow them to do as much they can for themselves -

pouring water, applying soap, drying. If they are used to pouring water, do the same, do not suddenly expose

them to a shower. If they refuse to bathe, try again a little later, when their mood has

changed. If they feel shy keep their body covered during bathing.

DEM-4

It will be better to encourage them to sit while giving a bath as it will cut down on their scope to make sudden movements, and reduce the risk of falling

DEM-5

2. Dressing

People with dementia often forget how to dress and may not recognize the need to change their clothes. They may sometimes appear in public with inappropriate clothing or no clothing. They may be unaware that they are not properly clothed, they may not realize that this may be very shocking for others. So be patient with them if they are not properly dressed. Being angry with them will make them feel more confused and scared.

Suggestions: Consider their comfort and convenience, as well as their dignity. Too

many layers of clothes can be difficult and confusing to put on correctly. Of course they still need to be kept warm if the weather ever gets cold. Loose fitting clothes are generally easier to put on, as well as more comfortable, particularly in hot weather.

It may be very difficult for them to manage zips. It will be easier to wear skirts or trousers held up by elastic. Some of their clothes might be converted in this way.

It will be difficult for them to manage buttons too, so a local tailor can convert the buttons into velcro which will be very easy to use both for the person with dementia, and their carer.

Again, too many choices can be confusing. Try to select their clothes for them, and lay them out the night before, so that they can find them easily when they need to dress in the morning.

When you have the opportunity, take extra time to dress them in their best clothes. Brush their hair neatly, and make sure that they are very well presented. Like anyone else, they will be happy to look smart. They will appreciate the extra attention and will feel good about themselves. They may also be more cooperative with you.

DEM-6

3. Toileting and incontinence

The person with dementia may lose the ability to recognize when to go to the toilet, where the toilet is or what to do when in the toilet. People with dementia can pass urine or motion in their clothes, sitting in the hall. This is called urinary incontinence and bowel incontinence. The two are separate problems and one can occur without the other.

Medical problems can cause incontinence, so if this problem occurs for the first time, you should check with the doctor straight away. There may be a problem like bladder infection, diabetes or a problem with medication that can be corrected.

People sometimes suggest that you should give the person with dementia fewer drinks to reduce incontinence. However, be careful. Particularly in hot weather an older person can get dehydrated (dry out) very quickly, and this can make them seriously ill. Both too little and too much fluid can be bad.

People use different terms for passing urine, piss, take a leak, going to toilet etc. Due to difficulty with language the person may be unable to say that they need to go to the toilet and use the wrong words.

Regularly taking the person to the toilet can avoid lot of embarrassment for the person and family.

Suggestions: Make a schedule and assist the person in going to the toilet Label the toilet door using bright colours and large letters. Easily removable clothing will help them not to pass urine in their pants. Always seat them in a chair from which they can get up easily. Cut down on drinks before bedtime. Provide a commode by the bedside so that they can avoid searching for

the toilet in the night.

DEM-7

4. Repeated questioning

A person with dementia may quickly forget what they asked us even before we answer. So they repeatedly ask the same question. This can be annoying and exhausting for family members. If they are repeatedly asking the same question it may be that they are little worried about something else, if the family members can correctly guess and reassure him they will stop asking questions.

Suggestions:

Repeated questioning, or calling out, is often a sign of anxiety and insecurity

Don’t keep on answering the question over and over if this seems to be getting you nowhere. This will only make you impatient; they will pick this up and get more anxious.

Instead try to reassure them in their anxiety. Perhaps give them a hug, or tell them how much you care for them.

Try to distract them, offering something else to see, hear or to do.

Talk about the person's favorite topics.

You could try writing down the answer to commonly asked questions and referring to it when they start questioning.

DEM-8

5. Clinging

The person with dementia can become very dependent on the carer or family member and may try to be with them all the time. This can be quite difficult for the family member as they will find it difficult to get on with their life. Also the person can become very restless or frightened if the caregiver disappears. The trusted caregiver becomes the only security for the patient.

It is vital to try to sort out this problem. No carer, however devoted can afford to spend 24 hours a day, seven days a week in constant care. You need time to yourself, to rest, to recharge your batteries, and to return to your caring role refreshed and energetic as before.

Suggestions:

As far as possible try to involve other trusted people as regular carers, so that the patient can identify with at least two people. When one person wants to take time off the other can care for the person with dementia.

It is better to use a few regular carers rather than many people who will seem to be strangers to the person with dementia.

From the beginning of the illness make it a point not to be with the person with dementia all the time.

If you have to be away, first do it for a short time and slowly increase it, rather than being away for very long hours.

If you can arrange for other family members to take over at home for a while, try to take a short break. Go to visit your friends, or go out to do something enjoyable. Don’t feel badly about this. You will feel better for it, and the person with dementia will be better off with you refreshed rather than tired and irritable. Remember, it is good for them as well as for you!

DEM-9

6. Aggression

Aggression may or may not be a problem. Generally, this is a problem that appears rather late in the course of the dementia illness, when the person with dementia may have deteriorated in many ways. It is of course very disturbing to the family. Aggression can have several causes

1) The person with dementia may be in pain or discomfort. They may, for example turn out to have a broken leg that has not been noticed. They should therefore always be checked over by a doctor.2) People with dementia sometimes falsely believe that for example, someone has been stealing their possessions. They genuinely believe this to be true, and so understandably can become aggressive. 3) In advanced cases of dementia sometimes people may no longer recognise family members. They may think that you are someone else who is threatening them in some way. Again, understandably this can lead them to be aggressive. 4) Aggression is often caused by extreme anxiety. Try to work out what it is that is making them so anxious. 5) Sometimes aggression is simply a result of severe brain damage to parts of the brain that control aggressive behaviour. Always remember, whatever the cause, it isn’t the fault of the person with dementia. It is a result of the illness.

Suggestions: Keep calm and try not to show fear Try to find what provoked such anger. Think back and see if there is a

pattern of some kind. Try to avoid such situations in future. At all costs, do not become aggressive yourself. If you are losing your

temper, remove yourself from the person with dementia until you cool down.

Do not physically push, pull or restrain the person, unless it is necessary to do so for their own safety.

If all other measures fail, your doctor may be able to help with medication to calm down the person if he becomes violent often.

DEM-10

7. Wandering

The person with dementia can leave the house and may not know how to get back. So this can be a major problem for the family, as they have to go in search for them. It becomes all the more difficult if it happens in the nighttime. Similarly while taking them out they may start walking away from you. If you are not careful you can lose them.

Suggestions: Keep restraint to a minimum. It may seem kind to strap the person with

dementia in a chair, or lock them in a room to prevent them coming to harm, but this will be a horrible experience for them

Try using warning signs on key exits such as 'No Exit' 'Wet Paint' or 'Danger'

Try using physical obstacles which make it difficult for them to pass through a door

If you have a yard or garden then allow them access into this area. Provide objects of interest for them to look at touch and feel. Encourage them to wander into this area

As a last resort, if all else fails then lock the front door Keep an identification card with your address and telephone number in

the person's pocket Embroider their address in all their dresses. If the person gets lost, inform the police and give them a recent

photograph While taking the person out always hold their hands When you find the person try not to get angry. Remember they cannot

help it. Just take their hand and lead them back. (This will avoid a lot of embarrassment for both of you)

DEM-11

8. Loss of interest and activity

For many caregivers, as the disease progresses, one of the most distressing things is the sense that the person with dementia has withdrawn from their family and the world. They communicate less and less, and can seem to take little interest in what goes on around them. It is very important to recognize that the person with dementia cannot help this change. They are not being lazy, or difficult. It is just part of the illness. However, as with other aspects of the illness, there are things that you can do that may make a difference:

Are they depressed? Many people with dementia get depressed. They may appear sad,

anxious or tearful. They may talk in a despairing way. Often they lose interest in things, and sometimes go off their food and drink.

This is not surprising. When people with dementia are aware of their limitations, this can be very frustrating and upsetting. Also they can misunderstand what is going on around them, and this will be bewildering and frightening.

As many as half of all people with dementia may have some degree of depression

The ideas listed below may help with depression Sometimes, when depression does not lift of its own accord, treatment

with antidepressant medicines can help. These medicines are generally safe and easy to take. Your physician can advise.

Maintain Communication Make sure they can see and hear properly (eg spectacles may no longer

be of the right prescription, or a hearing aid may not be working properly)

Make sure you have their attention before speaking Speak clearly, slowly, face to face and at eye level Show love and warmth through hugs, if this is comfortable for them Pay attention to their body language - people whose language is

impaired communicate through non-verbal means. Be aware of your own body language.

DEM-12

Find our what combination of word reminders, or prompting words, guidance and demonstration is needed to communicate effectively with them.

Keep up activities and interests Planned activities can enhance a person's sense of dignity and self worth

by giving purpose and meaning to life. Remember, however that because dementia advances, their likes,

dislikes and abilities will change over time. There is no point in trying to encourage the person with dementia to do something that doesn’t interest them, or that is now beyond them. You will need to try different things.

A person who was once a homemaker, gardener, trade person or business executive may gain satisfaction and reassurance from using some ability related to their job. Often some of these abilities are kept when in other ways they can do little for themselves

In the later stages of the illness, consider how you may stimulate each of the senses in simple, interesting but reassuring ways Hearing – music, a radio program, reading a book or poem out loud,

singing Touch – interesting objects that can be squeezed, or bent, or are

covered in soft material (make sure that they cannot come to any harm with them!)

Sight – bright colors, painting, clearly labeled pictures of relatives, old photographs

Smell – involve them in cooking, familiar smells of food and spices (remember again to keep things safe at all times!), perfumes

DEM-13

Session Slides For comments and suggestion on this guide, please email to [email protected]

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DEM-14

mhGAP-IG base course - field test version 1.00 – May 2012 1

Base CourseDementia

Field test version-1.00 May 2012DO NOT UPLOAD ON THE INTERNET


Contents (Dementia)

A. Introduction 15 minB. Learning objectivesC. Key actions

1. Establish communication and build trust 5 min2. Conduct assessment 50 min3. Plan and start management 10 min4. Link with other services and supports 5 min5. Follow up 5 min

Total time: 1.5 hours

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DEM-15


True or False

• Dementia is a normal part of ageing

• Dementia is not a normal part of ageing. It is a result of an illness that affects the brain

FALSE


Introduction

• What is dementia

• What is the general perception of dementia and people with dementia in your community?


Common types of dementia

• Alzheimer’s Disease: The most prevalent type of dementia. Approximately 50-70%

• Vascular or Dementia: The second most common type of dementia is caused by multiple strokes due to interrupted blood flow to the brain. Approximately 20-30%

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DEM-16


Show video on Alzheimer's disease

• Show the video explaining about Alzheimer's disease.


Stages of dementia (Early stage)

• Become forgetful, especially things that just happened• Some difficulty with communication (e.g. difficulty in finding

words)• Become lost in familiar places• Lose track of the time, including time of day, month, year• Difficulty in making decisions and handling personal finances • Have difficulty carrying out complex household tasks• Mood and behaviour:

– less active and motivated and lose interest in activities and hobbies

– may show mood changes, including depression or anxiety – may react unusually angrily or aggressively on occasion


Stages of dementia (Middle stage)

• Become very forgetful, especially of recent events and people's names

• Have difficulty comprehending time, date, place and events• Increasing difficulty with communication• Need help with personal care (i.e. toileting, dressing)• Unable to prepare food, cook, clean or shop• Unable to live alone safely without considerable support• Behaviour changes (e.g. wandering, repeated questioning,

calling out, clinging, disturbed sleeping, hallucinations)• Inappropriate behaviour (e.g. disinhibition, aggression)

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DEM-17


Stages of dementia (Late stage)

• Unaware of time and place• May not understand what is happening around them• Unable to recognize relatives, and friends• Unable to eat without assistance• Increasing need for assisted self-care• May have bladder and bowel incontinence• May be unable to walk or be confined to a wheelchair or bed• Behaviour changes may escalate and include aggression

towards carer ( kicking, hitting, screaming or moaning) • Unable to find his or her way around in the home


What are some potentially reversible causes of dementia

• Malnutrition

• Dehydration

• Metabolic Dysfunction– disorder of liver, kidneys, pancreas

• Vitamin B12 Deficiency

• Thyroid Deficiency

• Normal Pressure Hydrocephalus

• Brain tumour

• Head injury


Why is dementia important?

• Dementia is one of the major causes of disability in late-life• Dementia is prevalent worldwide but is often undiagnosed• Health care provider are often not aware of impact of dementia

on carers and families

Growth in numbers of people with dementia

Low-and Middle- income countries

High- income countries

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Contents (Dementia)

A. IntroductionB. Learning objectivesC. Key actions

1. Establish communication and build trust2. Conduct assessment3. Plan and start management4. Link with other services and supports5. Follow up


• To be able to suspect dementia in older people

• To be able to assess for and manage Behavioural and Psychological Symptoms of Dementia

• To be able to assess and support the carers needs

• To understand the need for referral to a specialist

• To be able to follow up appropriately

Learning objectives


Contents (Dementia)



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DEM-19


Establish communication and build trust

• Person with dementia may have cognitive impairments which will limit your communications

• Make an effort to communicate with both the person and the carers

• Make sure the person can see and hear properly (egspectacles may no longer be of the right prescription, or a hearing aid may not be working properly)

• Speak clearly, slowly and with eye contact

• Pay attention to body language - people whose language is impaired often communicate through non-verbal means


Establish communication and build trust: Carers

• Provide the carer and family with opportunities to express their worries and concerns about the person’s illness

• Listen carefully to the concerns of the carer and family members

• Highlight the positive aspects of the family– Congratulate the family for taking such good care of the

person if appropriate

• Be flexible in your approach with the carer and family. The family may come to you with needs you did not expect.


Contents (Dementia)


1. Establish communication and build trust2. Conduct assessment 3. Plan and start management4. Link with other services and supports5. Follow up

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DEM-20


Assessment

• What presentations would make you suspect dementia?

• Refer to the Master Chart


How to assess for dementia


Testing the orientation, memory and language

Example of questions;1. Tell them 3 words (e.g. Boat, House, Fish) and ask them to

repeat after you2. Point to their elbow and ask “What do we call this?” 3. Ask below questions

– What do you do with a hammer? (Acceptable answer 'Drive a nail into something')

– Where is the local market/local store? – What day of the week is it? – What is the season? – Please point first to the window and then to the door

4. Ask "Do you remember the three words I told you a few minutes ago?" (Boat, House, Fish)

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DEM-21


Get more information about the symptoms

• In a person with dementia, what answers would you expect to these questions?


When is dementia likely?

• If these criteria are present, then dementia is likely


Depression resembling dementia

• In older people, depression can sometimes resemble dementia

• Older people with depression can often be confused as having dementia because the symptoms of mild depression (irritability, low interest and low function) are similar to dementia

• In this case, depression should be managed first and the person should be re-assess in 12 weeks for presence of dementia

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DEM-22


Delirium resembling dementia

• Delirium is a state of mental confusion that develops quickly and usually fluctuates in intensity. It has many causes, including medications and infections.

• Delirium can be confused for dementia.• Suspect delirium if it is acute onset and the person has

impaired level of consciousness.• If you think that a person has delirium;

– Try to identify and manage underlying cause– Assess for dehydration and give fluid– Ensure that the person is safe and comfortable – Refer the person to a specialist (e.g. neurologist,

psychiatrist, or internal medicine specialist).


Does the person have another mhGAP condition?

• Use the appropriate mhGAP-IG module to assess other mhGAP conditions


Discuss the presence of Behavioural and Psychological Symptoms of Dementia

• 90% of patients affected by dementia will experience Behavioral and Psychological Symptoms of Dementia that are severe enough to be labeled a problem at some time during the course of their illness.

• Behavioural and psychological problems such as wandering, night-time disturbance, agitation and aggression

• Such behaviour may result in an increase in risk of harm for the person and the carer

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DEM-23

Behavioural and Psychological Symptoms of Dementia

• Apathy• Aggression• Wandering• Restlessness• Eating problems • Agitation• Disinhibition• Pacing• Screaming

• These are not usually present at the beginning of dementia

• These are usually what makes a carer seek help



What you must assess

• Look for risk of harm to the person• Some types of Behavioural and Psychological Symptoms of

Dementia (BPSD) put a person at risk• eg wandering and getting lost

• Carers may become frustrated• People with dementia are at higher risk of abuse and

neglect • ALWAYS ASSESS for signs and symptoms of abuse


What are some possible causes of dementia?

• Why do you need to ask each of the questions above?

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DEM-24


Cardiovascular disease & risk factors

Cardiovascular disease and risk factors put a person at higher risk of having vascular dementia


Does the person suffer from other physical conditions?

• You must do a full physical examination for everyone• Your examination should include an assessment of hearing,

vision and dentition • The following conditions are particularly important …


Reviewing medications

Review medications, particularly those with significant anticholinergic side-effects• Amitriptyline (antidepressant)• Antihistamines• Antipsychotic drugs• Anticholinergic drugs

It is critical to thoroughly review medications because they can cause dementia or dementia symptoms. Ceasing a medication in these case may reverse some of the symptoms

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DEM-25

Summary of assessment

1. Assess if presence of dementia is likely2. Rule out depression, delirium and other mhGAP priority

conditions3. Look for behavioural and psychological symptoms of

dementia4. Look out if there is a possible cause of dementia and

cardiovascular disease risk factors5. Look for presence of other physical conditions



Assessing the carer

• It is important to make sure that the carer is coping because they will ensure the well-being of the person with dementia


What is the impact on the carer?

• There are a number of potential strains on the carer– Psychological

• Stress and feelings of hopelessness• Depression – needs management as appropriate

– Physical• Poorer physical health• More visits to the doctor

– Social: • Friends and families embarrassed• Social isolation and exclusion

– Financial• Loss of earning from time away from work• Medical bills

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DEM-26


Role play: Assessment

• Farrah, 45 years old, brings her mother Ingrid, 73 years old, to your clinic

• Farrah reports that her mother has been acting strangely over the last few months

• Her mother has become increasingly forgetful and vague• Sometimes she doesn't seem to recognize people that she has

known for years

• Assess Ingrid for possible dementia by asking Farrah• Also assess Farrah's well-being


Contents (Dementia)




Management overview

• You must ALWAYS refer to or consult a specialist to confirm the diagnosis of dementia

• Managing the Behavioural and Psychological Symptoms of Dementia (BPSD)

• Providing psychoeducation and support to the carers• Medication should not be used routinely• Medication should only be used after specialist advice

There is much that can be done to improve symptoms and the living situation!

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DEM-27


Promoting independence, functioning and mobility

• Encourage the person with dementia to continue daily activities, even if takes more time (e.g Dressing, eating, toilet)

• Keep the floor around the house clear of clutter to avoid the person tripping and having a fall

• Put up signs for key locations around the house (e.g. toilet, bath, bedroom)

• Keep an identification card with contact number on the person in case the person gets lost


Interventions for the family and carers

• Acknowledge that it can be extremely frustrating and stressful to care for a person with dementia

• Tell the carer that it is important to try to have a break. Try to arrange for someone else to take turns looking after the person

• Provide training and support in specific skills

• Provide psychoeducation (next slide)


Psychoeducation

• Explain that– Dementia is not a normal part of ageing– Dementia is an "illness of the brain"– Dementia tends to get "worse" over time– Although there is "no cure", there is much that can be

done to help the person feel more comfortable and to make life less stressful for the carer

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DEM-28


Managing behavioural and psychological symptoms of dementia

Following are common problems faced by caregiver in managing care for older person with dementia :

1. Personal hygiene2. Dressing3. Toileting and incontinence4. Repeated questioning5. Clinging6. Aggression7. Wandering 8. Loss of interest and activity


Managing behavioural and psychological symptoms of dementia

• For delivering effective and simple intervention to the carers, you need to take the following steps

1. Discuss the main difficulties experienced by the carers

2. Convey the results of the assessment and provide education on dementia to family members

3. Educate carers about strategies for behaviour problems


Contents (Dementia)



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DEM-29


Link with other services and support

• People with dementia and their carers may benefit from a range of services and supports

– Respite care– Support services for carers– Community groups– Alzheimer's associations and any other group

• What other services are available in your community that could help people with dementia and their carers?


Contents (Dementia)




Who follows up and when?

• A person with dementia should ALWAYS see a specialist to confirm the diagnosis and create the initial management plan

• After the diagnosis is made, it is appropriate for the person to be followed up in primary care

• You should see the person at least once every 3 months, but more often as needed

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DEM-30


What should you do at follow up

• Monitor the physical condition of the person (nutrition, cardiovascular risk factors)

• Monitor medications (e.g. anticholinergic)• Monitor safety risks and self harm risks (eg wandering) • Assess progression of symptoms• Assess for co-morbid depression• Assess for the presence of Behavioural and Psychological

Symptoms of Dementia • Assess the well-being of the carer (carer strain and

depression)• Assess the need for information and training for the carer and

family


Key messages

• Dementia is not a normal part of ageing

• It is critical to assess the carer’s strain and provide psychosocial support to address it

• There is much that can be done to improve symptoms and the living situation

• You must assess for and manage behavioural and psychological symptoms of the person with dementia

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