Understanding Alzheimer s. Overcoming everyday challenges in Alzheimer s

Transcription

1 Understanding Alzheimer s Overcoming everyday challenges in Alzheimer s I 1

2 Forgetting things is a normal part of getting older and something we will all experience. However, when forgetfulness starts to disrupt a person s lifestyle or change their normal behaviour, it can sometimes be a symptom of Alzheimer s disease (AD). Receiving a diagnosis and experiencing the first symptoms of AD can be a distressing and difficult situation for both the person with the disease as well as for the carer. However, it is important to stay positive and realise that with proper information, treatment, planning and routines, living with AD can be manageable. The aim of this booklet is to provide answers to the basic questions that will be of interest to those affected by AD, friends and family members. A clear understanding of the disease will help those involved to be prepared for the challenges to come. It begins by considering the disease itself, the changes that it may cause, how it can develop over time as well as treatment options. Finally, it contains a description of the more practical implications of AD including care concerns and living arrangements. 2

3 Contents: 1. What is Alzheimer s Disease? 4 How common is AD? What is the cause of AD? How does AD affect the brain? Who is affected? Getting a diagnosis 2. What changes will take place? 10 Changes in cognition Changes in ability to function Changes in behaviour 3. How is Alzheimer s treated? 18 What are the medical treatments? How are these medical treatments taken? Getting the right dose What about alternative treatments? Treating symptoms associated with AD 4. What kind of care is needed? 22 Providing care What legal issues should be dealt with? 5. Where can more information be found? 24 3

4 1. What is Alzheimer s Disease? Alzheimer s disease (AD) is a progressive illness that causes cell changes in the parts of the brain that deal with memory, language, perception and behaviour. Initial symptoms of AD include difficulty remembering, misplacing objects and a lack of concentration. Emotional symptoms such as moodiness, restlessness or depression are also common, and behavioural disturbances such as agitation and aggression can also become increasingly noticeable. Unlike the forgetfulness typical of old age, Alzheimer s is a disease that can be diagnosed by a doctor using both physiological and cognitive tests, as well as brain imaging techniques. As the disease progresses, the diagnosed person and his/her carer will find handling the activities of daily living more and more difficult. Having more information is essential for coping with the disease, as it will help to know what to expect and how to prepare for changes in lifestyle. Refer to booklet II Coping with Caring, also available in this series. 4

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6 How common is AD? Dementia is a mental disorder that affects memory, thought processes and behaviour. AD is the most common type of dementia. Globally, over 23 million cases of Alzheimer s and other dementia disorders are reported every year. What is the cause of AD? The actual cause of AD has not yet been found. Current knowledge indicates that a progressive loss of brain cells is related to the formation of abnormal plaques of insoluble protein fragments in and around the cells. Another characteristic sign of AD is the presence of tangles within the brain cells, formed by abnormal twists of tau, a vital protein in healthy cells. Although these formations may be harmless in themselves, they may activate some kind of defence mechanism in the body that causes cell degeneration in the affected areas. In fact, it is very likely that AD is not caused by any single factor, but by a number of factors that affect each person differently. 6

7 Dementia may be associated with Huntington s disease, Parkinson s disease or certain infectious diseases. Damage to the brain from physical trauma, metabolic disorders, or toxins may also influence development of the disease. How does AD affect the brain? Alzheimer s disease causes cell damage in brain cells with eventual total loss of the affected cells. This damage occurs in parts of the brain that control memory, thought and language. It is a progressive disease, which means that as more brain cells become affected over time, more symptoms will appear. Who is affected? Getting older appears to be the most decisive cause of AD, but other factors such as gender and genes may also increase the risk of developing the disease. In the majority of cases (95%), the disease develops in people aged 65 years and older, which means that as people live longer and longer, the number of people with the disease will increase. 7

8 A small percentage of people develop the disease at an earlier age; between 35 and 60 years of age. With this early-onset AD, there is thought to be a link with genetics, as cases tend to cluster within certain families. The disease occurs across ethnic groups, social class and gender, although it is slightly more common in women. Getting a diagnosis AD is diagnosed by the doctor using both physiological and cognitive tests, as well as brain imaging techniques. Symptoms for the different forms of dementia may be very similar to those of AD, so careful attention to symptoms by family members will help to get an accurate diagnosis and early initiation of treatment. During the diagnosis and afterwards, those involved will need both physical and emotional support from relatives and friends. Whether or not the final diagnosis is AD, getting a professional opinion and the treatment needed will help all involved to cope. 8

9 Receiving the diagnosis came as something of a relief. Gaining a more detailed understanding of what was going on enabled us to be able to cope with the different challenges in a more structured way. William, 73 years, AD patient 9

10 2. What changes will take place? Alzheimer s disease affects people in different ways at different stages. The first things that are usually noticed are memory loss and forgetfulness. As time goes on, other abilities may be affected which vary from person to person. From a clinical point of view, the symptoms of AD can be divided into three main categories: Cognitive: Symptoms that affect the ability to understand, memory and language Behavioural: Symptoms that affect mood and behaviour Functional: Symptoms that affect the ability to perform daily activities 10

11 When the doctor first said Alzheimer s, we weren t aware of what kind of impact it would have. But now we have become more knowledgeable about what changes can happen. Bette, 54 years, carer 11

12 Changes in cognition Often the first signs of AD, cognitive symptoms are those that affect non-emotional mental processes such as reasoning, memory and judgment. In the early stages, the person with the disease may be aware of a decline in their cognitive abilities, which can lead to depression and/or anxiety. Cognitive symptoms include: Forgetfulness: e.g. losing keys or wallet, forgetting food cooking in the oven. Indecisiveness: e.g. difficulties with rationalising and coming to a conclusion. Disorientation: e.g. getting lost in familiar places. Language difficulties: e.g. word-finding issues, vague speech. Lack of recognition: e.g. reduced ability to recognise familiar objects or even family members. 12

13 The symptoms of Alzheimer s will affect both the person diagnosed with AD and the people around them by posing challenges to everyday life. That s why it s important to seek and adhere to specialist treatment as soon as possible and start to create ways of making life easier. The value of any improvement in symptoms will have a positive effect on quality of life for all concerned. 13

14 Changes in ability to function AD will also cause difficulties in the way the person with the disease functions in terms of performing basic daily activities. Undertaking tasks such as personal grooming and household chores will therefore become increasingly demanding for the individual with AD, as a result, there will be an increasing need for care. Functional symptoms include: Neglect of personal hygiene: e.g. not bathing or brushing teeth. Difficulty grooming and getting dressed: e.g. not brushing hair or being unable to button clothing. Difficulty handling money, shopping or doing hobbies: e.g. inability to give correct change in shops. Loss of control of posture and walking: e.g. slumped stance, impaired walking. 14

15 Some of these difficulties are associated with memory problems; the person might simply forget to take care of everyday practical issues. There may also be an issue with understanding the order in which chores are performed. Over time, the disease may also affect the patient s ability to move in a coordinated way and many daily activities will become physically awkward. 15

16 Changes in behaviour One of the most distressing aspects of AD for family and carers is the change in behaviour that it can cause as the disease affects different parts of the brain. When someone you love behaves in an unusual way or appears to change personality, it can be very difficult to come to terms with. Behavioural symptoms include: Mood changes: e.g. anxiety, agitation/aggression, irritability. Inappropriate behaviour: e.g. talking too loudly. Wandering: e.g. repeated attempts to leave house or walking up and down in one area. Sleep disturbances: e.g. repeated waking during the night. Delusions: e.g. the belief that people are stealing belongings or that a spouse or carer is an impostor. Hallucinations: e.g. perceptions of intruders or misidentification of people. 16

17 Many of these behavioural changes will appear to affect the person s overall personality, which can be particularly distressing for family and friends. Some people with the disease may eventually become very aggressive and appear unkind and accusing. Often these symptoms can be relieved with treatment. It is essential to remember that it is the disease that is causing these changes; the person inside is still the same and is not behaving this way on purpose. Despite these complicated symptoms, the ability to express feelings will not be impaired. Someone with AD will still be able to share joy, anger, fear and most importantly love. 17

18 3. How is Alzheimer s treated? There is currently no cure for Alzheimer s disease. However, there are several treatments that can ease or slow the development of certain symptoms. Even small improvements in specific symptoms can have a great effect on the ability to undertake everyday activities. An early diagnosis means that treatment can be started as soon as possible, helping to improve the quality of everyday life for both the individual with the disease and those around them. What are the medical treatments? Medical treatment for AD falls into two main categories: Acetylcholinesterase inhibitors (AChEI s) N-methyl-D-aspartate (NMDA) receptor antagonists Explained simply, AChEIs act to raise the levels of a chemical in the brain (acetylcholine) that is known to be at abnormally low concentrations in the early stages of AD. Generic names for these treatments are donepezil, galantamine and rivastigmine. 18

19 In contrast, the NMDA receptor antagonists act to protect the brain from overstimulation by a chemical (glutamate) that can damage and eventually kill brain cells. Memantine is the only drug in this class and has been shown to improve various symptoms of AD related to cognition, function and behaviour, even in the advanced stages of the disease. How are these medical treatments taken? These treatments are taken orally as tablets or liquid, and can be easily taken every day at home. It is essential to stick to the prescribed dose and keep contact with the doctor to get the best effects of treatment. As the person taking the medication may suffer from memory problems, it is important that someone else checks that the medication is being taken regularly and according to the instructions. A journal can help keep track of treatment given. Refer to booket III Alzheimer s Journal, also available in this series. Getting the right dose It is normal for a person to be started on a low dose of medication that is then gradually increased by their doctor until the required level or maintenance dose is reached. A minimum six month period, during which cognitive, functional and behavioural status is monitored, should elapse before any definite decision regarding efficacy of the treatment is made. Response to the treatment should not be judged on the basis of monitoring change in only one of the above domains, as symptoms vary from person to person, so does the response to these treatments. 19

20 What about alternative treatments? Substances such as Ginkgo biloba and Vitamin E are thought by some people to have some value in treating AD. However, it is essential that all options are discussed with your doctor before taking any such substances, as interactions with other treatments should be determined first. Treating symptoms associated with AD Other medical treatments may also be prescribed to alleviate symptoms associated with the disease such as anxiety and depression. These treatments may help by improving specific symptoms and helping to retain and/or increase the quality of life for the person with AD and carer. 20

21 With AD, you have to celebrate what you still have and what you can do together, and encourage the person to go on doing that for as long as they possibly can. Suzanne, 67 years, carer 21

22 4. What kind of care is needed? Initially, it may be possible for the person with AD to retain a fairly independent life. As time goes on and more symptoms develop, it will become necessary for another person to help with certain issues such as medication, financial matters and daily activities. Eventually the person with the disease may require full-time care, which will be difficult for one person to cope with. The type of care will also change over time. Initially, the person may need assistance with remembering details such as names, dates, words, directions, and where things have been placed. Daily activities such as cooking, cleaning and shopping will also need to be assisted, as well as washing and grooming. Changes in behaviour such as increased aggression or irritability can make caring more and more difficult. As symptoms progress the physical side of the illness becomes apparent and help may be needed with walking, toileting and other activities. At this point, outside help may be required. Eventually a residential home where the person with AD can receive around-the-clock care may be the best option. Medical professionals and care workers can help identify what type of help is necessary and available for each individual situation and may be able to provide contact details. In addition, Alzheimer s/dementia associations and help-groups often offer this kind of information. Contact details for useful national organisations can be found in the next chapter. 22

23 Providing care Throughout the illness, the carer of the person with AD will face his or her own emotional and physical challenges as the disease symptoms progress. It will help to have some outside support; carers should try and recognise their own limits and feel able to ask for as much help as they need, in the form of home visits from professionals or respite care in a day centre or nursing home. Sharing problems, seeking advice and making time for individual needs will help the carer to manage the range of emotions that may accompany the task of caring. There are some practical ways to manage the care of someone with AD, some of which can be found in the accompanying guide Coping with Caring. What legal issues should be dealt with? From a legal point of view, it is helpful if the person with AD and their family make arrangements such as a will, appointment of a power of attorney and other issues early on. This will ensure that the individual with the disease has as much authority over their future as possible, while they retain their independence. More details on how to handle legal and financial issues can be found in the accompanying booklet, Coping with Caring. 23

24 5. Where can more information be found? Refer to the following pages for important local contact information on organisations that have information about the disease and support groups as well as services available in your area. page 25: Alzheimer s SA page 26: Dementia SA Across the globe, there are many associations that can help with information and support for those affected by Alzheimer s disease. Alzheimer s Disease International is an umbrella organisation of Alzheimer s associations around the world. There is a comprehensive list of associations, available on DementiaNet is an online dementia community with articles, discussion and more. 24

25 Alzheimer s/dementia Support Services Alzheimer s SA Call helpline : National Office Tel : (011) info@alzheimers.org.za Regions Eastern Cape Tel : (041) Southern Cape Tel : (044) Free State Tel : (051) Gauteng Tel : (011) KwaZulu-Natal Tel : (031) Website : 25

26 Alzheimer s/dementia Support Services: Dementia SA Tel : (021) (021) (021) Fax: (021) info@dementiasa.org Website : 26

27 International organisations: Alzheimer Europe 145, route de Thionville L-2611 Luxembourg Tel: Fax: Website: Alzheimer s Disease International (ADI) Lower Marsh London SE1 7RG Tel: Fax: info@alz.co.uk Website: 27

28 1 1 1 The complete Overcoming everyday challenges in Alzheimer s guide: Understanding Alzheimer s Overcoming everyday challenges in Alzheimer s I Understanding Alzheimer s - Overcoming everyday challenges in Alzheimer s I An informative booklet covering the issues that will be of interest to those affected by AD, friends and family members. Coping with Caring Coping with Caring - Overcoming everyday challenges in Alzheimer s II A practical guide to coping with the various aspects of caring for a person with AD. Overcoming everyday challenges in Alzheimer s II Alzheimer s Journal Alzheimer se Siekte Joernaal III Alzheimer s Journal - Overcoming everyday challenges in Alzheimer s III A daily journal and assessment scale that will help the person with AD, their carer and doctor to keep track of the disease. Lundbeck South Africa (Pty) Ltd P O Box 2171 North Riding 2162 Tel: Fax