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Coping with Caring

Overcoming everyday challenges in Alzheimer’s

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Alzheimer’s disease (AD) is a progressive disease that affects the everyday lives of both the person with AD and those caring for them. These daily challenges range from the practical to the emotional; how they are dealt with will have a high impact on quality of life for all concerned.

Living with the disease is about taking each challenge as it arrives and thus, living for each day. However, there are also techniques and treatments that can stabilise or improve certain symptoms for the benefit of the person with AD and their carer.

This booklet is intended to be a practical guide for coping with the various aspects of caring for a person with AD. There are tips for everyday tasks such as bathing, dressing and eating; a guide to making your home a safe environment as well as advice for handling the behavioural changes that may be experienced as part of the disease.

In addition to the information contained in this booklet, it is recommended that you seek as much advice and assistance from Alzheimer’s/Dementia associations and groups as possible. Understanding what the person with Alzheimer’s is going through, as well as getting external support will help both of you with the everyday challenges of AD.

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Contents:

1. After the diagnosis 4

• Staying on track after diagnosis

2. Coping with memory problems 9

3. Communicating 11

4. Orientation 13 • General considerations • Driving

5. Coping with behavioural changes 18

6. Everyday care 22 • Hygiene and grooming • Getting dressed • Eating

7. A safe home 28 • Overall considerations • Dangerous objects

8. An active lifestyle 32

9. Socialising 34

10. Planning for the future 36

• The important things in life

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Receiving a diagnosis of Alzheimer’s disease will undoubtedly be a distressing experience for the person with the disease and those around them. Knowing what to expect will help those affected to deal with various emotions and issues as they arise.

Carers may find themselves dealing with the following issues:

• Anxiety over whom to tell about the diagnosis.

• Increased stress over caring responsibilities.

• Anxiety over legal and financial issues.

• Feelings of grief and loss.

• Fear of how the disease will affect their loved ones, both physically and in terms of their behaviour.

• Guilt or apprehension associated with the changed roles within the relationship.

1. After the diagnosis

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Individuals with the disease may experience the following:

• Feelings of people trying to help too much or too little.

• Loneliness because no-one else seems to understand exactly.

• Role changes in relationships with family and friends.

• Anxiety over whom to tell about the diagnosis.

• Increased or decreased sexual desire.

• Frustration because of not being understood by others.

• Problems trusting their own decisions.

• Family and friends withdrawing or avoiding them.

• Difficulty interacting in social settings.

• Depression or anger about the way life is changing.

• Increased anxiety over legal and financial issues.

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It will help to talk to others about the changes that are taking place. There are many support groups where people can share their experiences with people in similar situations and create helpful new friendships.

Other points to consider:

• Include the person with Alzheimer’s in any decision-making as much as possible.

• Be open with friends and family about the changes that are taking place.

• Make use of the local Alzheimer’s/Dementia associations or other interest groups for information on dealing with legal and financial issues, as well as other resources.

• Discuss and explore alternative care and housing options such as home care, adult day care, assisted living and nursing facilities, before they are needed.

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Things that may help:

• Suggest that the person keeps a journal about their experiences and feelings. Also included in this information series is an ‘Alzheimer’s Journal’. Refer to the back page for more information.

• Join a support group to share experiences with people in a similar situation.

• Talk to a doctor, who can determine which treatment is appropriate.

• Encourage the person to express their feelings with close relatives and friends.

• Encourage the person to keep doing the activities that they enjoy for as long as they are able.

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Staying on track after diagnosisLike most people, life for those affected by Alzheimer’s includes both good and difficult times. Prescription treatment, activity levels and the disease progression itself will have an influence on everyday life. It can be very helpful for the person with the disease, his/her carer and the doctor to keep track of how things are going in a journal, such as the accompanying ‘Alzheimer’s Journal’.

Benefits of using the ‘Alzheimer’s Journal’:

• Keeping track of day-to-day thoughts and experiences provides a sense of perspective that can help with understanding and coping with AD.

• This overview may help those involved to discover activities with positive effects for everyday life, as well as situations to avoid.

• The assessment guide will provide the doctor with a clear overview of the disease and treatment status.

• The journal will provide important information to anyone who may take over caregiving duties.

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Difficulty with remembering words and events and losing track of the present are often the first memory loss symptoms to appear. For many AD patients, short-term memory is affected the most, whereas remembering events and people from the more distant past is easier. There are many ways to manage life so that the challenges associated with impaired memory will be less difficult for both patient and carer.

Things that may help:

• Establish routines: organising the day in a structured manner will relieve any possible stress from disorientation.

• Use reminders: small notes, lists, calendars and clocks are a way of keeping things in mind.

• Label photographs and objects around the house. This will help to locate things and reduce the frustration of not being able to remember a word or a name.

• Keep a book in which to write important things: phone numbers, names, appointments and thoughts and ideas to retain.

• Organise each day so that most challenging things are undertaken at the time of day when the person with AD feels most alert.

• Use a notice board to write down the date and activities planned for the day.

2. Coping with memory problems

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Jogging memory:

With AD, it is important to keep the memory active, as it is thought that constant stimulation can help slow the progress of the disease. Stimulating activities can be anything from dancing, singing, doing puzzles, reading and painting.

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Finding the right words to express thoughts will become increasingly difficult for a person with AD. It will also become more and more difficult for them to understand others. Communication in a clear and simple manner is necessary for all concerned, using easy words and short sentences. As a carer, you must therefore learn to adapt your methods of communicating in accordance with the changes taking place.

“When a word slips my mind and I can’t think of it, I just try

to express my thoughts in other words. I suppose it can be

quite funny or even poetic in a way, using alternative words to

describe thoughts and things.”

Susan, 54 years, AD patient

3. Communicating

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Tips that can make communication easier:

• Make eye contact and try to avoid disturbing factors such as noise, music and TV.

• Repeat messages in order to secure understanding and ask the same of the patient.

• Remember that there is a difference between telling and showing − use both ways of expression.

• Pay attention to gestures and body language as this also increases the ability for mutual communication.

• Be reassuring and use humour if appropriate. This will relieve possible tensions.

• Don’t rush conversations. Allow yourself and the person with AD all the time necessary.

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General considerationsA natural consequence of problems with memory and difficulties in communicating is an impaired sense of time and space. The person with AD can be easily confused and may need help with orientation.

Besides memory aids such as schedules, labels, notes and photographs, you can help the person in several ways:

• Give verbal reminders of the time and day it is and of the planned activities for the day.

• If the person is still independent and able to get around on their own, make sure that they are equipped with the things they need to ensure a safe return home: address details, list of key telephone numbers and a map that can help other people direct the person with AD.

• Use a notice board to write down the date and activities planned for the day.

4. Orientation

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Thought should also be given to indoor orientation for the person with AD. For instance the living environment can be made pleasant i.e. more bright and cheerful, less cluttered and easier to move around in. This can help to lessen feelings of depression, anxiety or disorientation.

Things that may help:

• Once established, try to keep the home space consistent. Keeping things in the same place will help keep things familiar and easy to navigate.

• If necessary, use signs on the door of rooms such as the toilet, dining room to help facilitate orientation.

• Stimulate the memory. Place photo albums, objects with sentimental value, old magazines etc around the house, and encourage the person to reminisce.

An important part of helping the person with AD orientate him or herself is to create a simple and safe home environment. There are suggestions for how to achieve this further on in this booklet – see chapter 7.

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DrivingA diagnosis of AD is not in itself a reason to stop driving. What matters, from both a legal and a practical point of view, is whether or not an individual is still able to drive safely.

For experienced drivers, driving may seem to be a largely automatic activity. However, driving is a complicated task that requires a combination of complex thought processes, manual skills and quick reactions. Many people with AD retain learned skills and are able to drive safely for some time after diagnosis. However, as time goes on, the disease may have serious effects on memory, perception and the ability to perform even simple tasks. Eventually the ability to drive will be impaired, a stage that varies from person to person.

Many people with AD choose to stop driving because they begin to find it stressful or they lose confidence. A person should consider stopping driving if:

• They feel less confident or more irritated when they drive.

• They feel confused if there are roadworks, for example, on a familiar route.

• They feel worried about having an accident.

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A person who has to give up driving may feel unhappy about losing some of their independence. However, there are increasing risks as time goes on and the carer must be prepared to be patient but firm on stopping driving. The following tips may help to negotiate the transition from driving to not driving:

• Making alternative arrangements for transport. Items such as groceries, meals and medicine prescription can also be delivered.

• Get a note from a doctor. A note from an authority figure may help the person with AD accept that they are no longer able to drive.

• Control access to keys and car. For some people it can be a matter of replacing a familiar car with a new one of a different colour and replacing keys with ones that don’t work.

• Disable the car. It may be necessary to install a switch that must be engaged for the car to start or even remove the battery.

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Henrik, 67 years, carer

“Giving up driving was a difficult issue for both of us. Not

only did Lena lose her independence but I had to take on all

the driving responsibility. But at least I don’t have to worry

about her getting lost anymore.”

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At the onset of the disease, the behaviour of a person suffering from AD will often reflect emotional stress. In these situations, the best way to care for a person is to express interest and provide as much comfort as possible.

As AD progresses, unusual behaviour will begin to occur. This can range from agitation/aggression to inappropriate responses in social interactions.

These kinds of changes can seem to affect the person with AD’s overall personality, which can be particularly distressing for family and friends. It is not uncommon to feel a sense of ‘mourning’ for the person they used to know. In addition, the stress of dealing with behavioural symptoms can have an impact on the health of the carer themselves.

Remember that it is the bewilderment and disorientation associated with the disease that is causing the abnormal behaviour − the person is unlikely to wilfully seek confrontation. The following tips can help with working together with the person with AD to effectively deal with some of the most common types of behavioural problems.

5. Coping with behavioural changes

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Things that may help:

• Examine behaviour − try to recognise if there are certain ‘triggers’ which could be avoided in the future.

• Avoid reacting angrily − be calm and reassuring by talking, touching and holding.

• In addition to comforting, distraction can be an effective way of dealing with inappropriate behaviour.

• Resist any temptation to punish the person by, for example, withdrawing a treat or ignoring them.

• If the person has a tendency to displace objects, try to find a pattern to the behaviour − favourite hiding places, typical objects that are hidden etc, so that important things can be located.

• If the person is being offensive, try not be insulted or agitated. Try putting yourself in the person’s situation. Imagine what they may be feeling, and what they might be trying to express.

• An incident of aggressive behaviour may well leave you feeling exhausted and distressed. Find ways to help to deal with your own feelings.

• Discuss aggressive behaviour with your doctor as soon as possible and get advice – these symptoms can be relieved with treatment.

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“It’s not always easy, but I have come to understand that the

best way to deal with my wife’s aggressive behaviour is to

comfort her. I ask her to come with me to the kitchen where

she often feels more peaceful. I’ll make us something to drink

and try to get her to express what it is she is experiencing.

This little routine has a very calming effect on her.”

Benjamin, 70 years, carer

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Hygiene and groomingWashing and bathing can become increasingly difficult for a person with AD and will also be unpleasant if rushed. The best way to provide care is to align the process to the person’s former habits and preferences.

Remember that hygiene is a personal matter. Even though the person with AD might need help with directing their attention to this issue, take care not to be offensive. Use encouragement and hints instead of enforcing orders.

6. Everyday care

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Things that can make everyday care easier:

• Try and find out what makes bathing a pleasant experience, e.g. gentle conversation, a scalp massage, soft music or scented soap.

• Attention should be paid to making the bathroom a safe environment. Install handrails, non-slip mats and raised toilet seats.

• The rush of water from an overhead shower may be frightening or disorienting for some people. A hand-held shower may be more suitable.

• Be sensitive to the person’s preferences, and try to work out which approaches are most likely to be effective.

• Try to be flexible. You may find that different approaches work at different times, depending on the person’s mood and the severity of their symptoms.

• Being organised can help reduce stress. Try to make sure you have everything you need ready at hand before you start.

• While the person is undressed, check for any red or sore areas. If you notice anything you’re concerned about, mention it to your doctor or another medical professional.

• Offer tactful reminders and practical help, but allow the person to maintain the highest degree of independence.

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Getting dressedAnyone can experience difficulty deciding what to wear on a particular day. For a person with AD though, it can become a significant challenge. Their understanding of what is appropriate to wear according to the weather conditions or the nature of an appointment/event may eventually become impaired.

It is important to enable people with AD to make their own choices for as long as they can. If they do need assistance, be sure to offer it tactfully and sensitively. To help the person with this daily task, it is a good idea to make dressing as simple as possible.

Helping a person to look good is an important way to maintain their confidence. Regularly compliment the person on the way they look, and encourage them to take pride in their appearance.

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Things that may help:

• Limit the number of choices to be made and select clothes that are both comfortable to wear and easy to put on.

• Avoid excessive clothing in the closet.

• Label drawers with stickers that either name or illustrate the clothes that they contain.

• Lay out clothes in the order in which they are to be put on.

• Choose zippers instead of buttons and velcro instead of laces. Use well-fitting slip-on shoes or consider replacing shoelaces with elastic.

• If you’re caring for a woman, front-opening bras will be easier for you both to manage. Try to avoid self-supporting stockings as they can cause circulation problems. For men, boxer shorts may be easier to use.

• If the person resists your efforts to help, try leaving them for a while and then try again later.

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EatingFor a person with AD, mealtimes can present a number of challenges. They may lose their appetite, forget that they have already eaten or experience a general loss of interest in food. In addition, practical difficulties in handling knives and forks can make eating difficult.

The best way to stimulate both appetite and interest in food is to make cooking an activity that you can enjoy together. Encourage the person with AD to participate in activities in the kitchen.

Things that may help:

• Try to accommodate changes in preference. The person may develop entirely new tastes and grow to dislike food he or she may have liked previously.

• Sticking to routines is usually preferable, but in the case of poor appetite, small frequent meals may suit the person better than a routine of two or three larger meals a day.

• Give the person plenty of time to eat.

• Use utensils that are easy to handle.

• Discuss the food with each other at mealtimes.

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When it comes to eating, apply the same principle as with bathing and dressing: keep it simple. A simple table setting and plain, un-patterned dishes will help the person with AD to keep focussed. You should also avoid eating in front of the television, which causes distraction.

The kitchen contains equipment that can be potentially dangerous. It’s advisable to lock away sharp objects and double-check that the stove and other electrical devices are switched off properly. Make sure a small household fire-extinguisher is present in the kitchen in case of emergencies.

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Overall considerationsThere are some easy ways to create a sensible home environment that will make life easier for both the person with AD and his/her carers. Some are obvious, such as minimising sources of confusion and limiting access to potential dangerous objects. Other things that can be useful are stickers or labels that will help with identification of household objects.

The feeling of having control or impact on surroundings is important in terms of maintaining self-esteem. If a redecoration of your home is necessary to provide a safe environment, decisions should be made with the person with AD, if possible. Overall, the idea is to create a living space where orientation is made easy for the person with AD.

7. A Safe Home

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Things that may help:

• Remove unnecessary objects and furniture.

• Increase safety by marking of doorsteps and stairs, removing rugs, and installing grip bars in appropriate places.

• Ensuring adequate lighting all over the home. An even level of lighting makes it easier for the person to navigate − block bright sunlight with blinds or shades, and remember that mirrors and metallic surfaces can cause confusion.

• Pathways between rooms and furniture should be broad and clearly visible.

• Music and television can be both good and bad. Analyse whether they are a source of disturbance or a source of stimulation that provides relaxation.

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Dangerous objectsIt is important to evaluate the extent to which a person with AD can continue to use instruments and substances that could be hazardous. This includes cleaning chemicals, medication, power tools and electric appliances in the bathroom and the kitchen. Think carefully about restricting access to these items in order to avoid accidents. Security issues should be re-evaluated regularly as the disease progresses.

Things that may help:

• Consider keeping sharp knives in a locked drawer.

• Use appliances that turn off automatically e.g. toasters, coffee makers and some types of stoves.

• Remove locks from the bathroom door to prevent anyone from getting locked inside.

• It’s advisable to be with the person when medication is taken, to ensure correct administration and dosage.

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Michael, 62 years, AD patient

Encouraging people with AD to stay active should be a high priority. Since many activities include physical work, they will not only jog the memory, but also exercise the body, which is satisfying for the person with AD and also reduces anxiety and restlessness. This may help prevent the urge to wander which is a common symptom of AD. Another way of reducing this urge is to go for walks together.

We all need to feel productive and household chores can be viewed as activities rather than duties. If the person with AD doesn’t feel rushed or pressured, they will often enjoy participating in these activities.

“I’ve changed the way I approach certain things. I try not to

demand anything specific of myself, besides just enjoying

the activities – this goes for both hobbies and chores.”

8. An active lifestyle

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Things that may help:

• Encourage activities with an element of exercise: e.g. shopping, cleaning, walking or garden work.

• Choose activities based on things that the person can still do well; engaging in activities that are too challenging may lead to frustration rather than pleasure. Focus on enjoyment rather than achievement.

• If appropriate, encourage the reading of books or magazines and discuss afterwards.

• Remember to give the person praise and encouragement.

• Methods of relaxation such as massage may also be beneficial, and something as simple as showing affection can also help to ease stressful times.

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Things that may help:

• Allow and encourage friends and family to stay involved.

• Keep up a level of contact by scheduling regular events and visits. This will also allow you to plan activities and avoid stressful surprises.

• Seek out organised activities in your local area. National Alzheimer’s/Dementia associations may be able to provide information about what is available.

• See list of contact details on page 39.

People with AD may have a tendency to withdraw from social interaction. This is a natural reaction, but engagement in social activities should be strongly encouraged.

Research suggests that social ties can play an important role in minimising the effects of AD. Conversely, it is believed that isolation can aggravate the impact of the disease.

Encourage the person to engage in social activities, but choose situations where the person will feel comfortable and not stressed. Pay attention to their response and be flexible.

9. Socialising

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“When there are more than three people together, talking

at once, I can easily lose track of the conversation. But its

still nice to be in other people’s company.”

Tommy, 66 years, AD patient

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It’s important to manage the legal and financial affairs of the person with AD while they have the ability to make decisions. Issues such as power of attorney, wills and plans for future living arrangement should be made while the person still has some influence on the process. Settling these matters in advance will allow everyone concerned to enjoy life without anxiety about the future.

Things that may help:

• Consider all future living possibilities, including adult day care programs, at home care and hospice services. These can be discussed with the individual with the disease in advance so that their wishes are known.

• Ensure that financial matters are in the hands of someone trusted by the person with AD. If finances are well-organised initially, it can prevent difficulties arising when the person experiences the more advanced symptoms of the disease. It is best to get some professional advice on the most appropriate schemes and benefits available.

10. Planning for the Future

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• Discuss the manner in which decisions will be made on the person with AD’s behalf once the person is no longer able to manage his/her assets or enter into legally binding agreements. This should be discussed with the family’s legal advisor. It may involve the appointment of a curator bonis at a later stage in the illness.

• It is a good idea to make a will to ensure that when a person dies, all their belongings are distributed in the way they wish. It is important that this is written while the person is still deemed capable of making rational decisions. Although straightforward, this is a legal procedure and it is recommended that a lawyer oversees the process.

• A ‘living will’ or advanced healthcare directive is a document with healthcare-related instructions made by a person in sound mind who believes that they will later become incapable of making these decisions for themselves. This can include preferences for medication, long-term care choices and even issues such as diet and clothing.

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The important things in lifeWhen diagnosed with a serious disease, many people and their close family undergo a process of reviewing their lives. As a carer, you have a dual task; helping your loved one maintain his or her quality of life, as well as your own. Make sure that you do not ignore your own needs. If necessary, make time for yourself by arranging for additional carers to provide respite care. You can only provide good support for your loved one if you pay attention to your own needs and limits.

Things that may help:

• Reach out to family and friends and make them a part of your life..

• Find out what quality of life means to you and your family and strive to create those pleasant moments together.

• If possible, share your experiences with others in the same situation.

• Don’t forget yourself – it is vital that you invest in your own needs.

• Refer to enclosed booklet on Depression should you be feeling a “little down” or that you are not coping.

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Alzheimer’s / Dementia Support Services:www.mysupport.co.za

Alzheimer’s SAHelpline : 0860 102 681National Office Tel : (011) 478-2234E-mail : info@alzheimers.org.zaWebsite: www.alzheimers.org.za

RegionsEastern Cape GautengTel : (041) 371-4262 Tel : (011) 346-2757Southern Cape KwaZulu-NatalTel : (044) 533-0132 Tel : (031) 702-8811Free State Tel : (051) 522-4894

Dementia SATel : (021) 421 0077 (021) 421 0078 Fax: (021) 418 2772 (021) 418 5888E-mail: info@dementiasa.orgWebsite: www.dementiasa.org

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II

Coping with Caring

Overcoming everyday challenges in Alzheimer’s

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I

Understanding Alzheimer’s

Overcoming everyday challenges in Alzheimer’s

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Alzheimer’s Journal

Alzheimer se SiekteJoernaal

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• Understanding Alzheimer’s - Overcoming everyday challenges in Alzheimer’s IAn informative booklet covering the issues that will be of interest to those affected by AD, friends and family members.

The complete “Overcoming everyday challenges in Alzheimer’s” guide:

• Alzheimer’s Journal - Overcoming everyday challenges in Alzheimer’s IIIA daily journal and assessment scale that will help the person with AD, their carer and doctor to keep track of the disease.

• Coping with Caring- Overcoming everyday challenges in Alzheimer’s IIA practical guide to coping with the various aspects of caring for a person with AD.

Lundbeck South Africa (Pty) LtdP O Box 2171 North Riding 2162

Tel: 011 699 1600Fax 011 795 2252

MO 09/11