DEMENTIA INFORMATION FOR YOU AND YOUR FAMILY

DEMENTIA INFORMATION FOR YOU AND YOUR FAMILY

When you or a member of your family is diagnosed with dementia it is natural to feel anxious and to worry about what the future may hold. This booklet will provide you with some basic information and give you some useful links and contact details of organisations which can provide you with more detailed information and support. What is dementia? The word dementia describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language. Dementia is progressive, which means the symptoms will gradually get worse, however this is at a different rate for different people. Symptoms of dementia may include; Loss of memory This particularly affects short-term memory, for example forgetting what happened earlier in the day, nor being able to recall conversations, being repetitive or forgetting the way home from the shops. Long-term memory is usually still quite good. Mood change People with dementia may be withdrawn, sad, frightened or angry about what is happening to them. Communication problems Including problems finding the right words for things, for example describing the function of an item instead of naming it.

Causes of dementia There are several diseases and conditions that result in dementia. These include: Alzheimer s disease This is the most common cause of dementia. During the course of the disease, the chemistry and structure of the brain changes, leading to the death of brain cells. Vascular dementia If the oxygen supply to the brain fails, brain cells may die. The symptoms of vascular dementia can occur either suddenly, following a stroke, or over time, through a series of small strokes. Dementia with Lewy bodies This form of dementia gets its name from tiny spherical structures that develop inside nerve cells. Their presence in the brain leads to the deterioration of brain tissue. Symptoms can include disorientation and hallucinations, as well as some problems with planning, reasoning and problem solving. This form shares some characteristics with Parkinson s disease. Fronto-temporal dementia (including Pick s disease) In fronto-temporal dementia, damage is usually focused in the front part of the brain. Personality and behaviour are initially more affected than memory. Who gets dementia? There are about 850.000 people in the UK with dementia. Dementia mainly affects people over the age of 65 and the likelihood increases with age: however it can affect younger people. Dementia can affect men and women.

Can dementia be cured? The vast majority of causes of dementia cannot be cured, although research is continuing into developing drugs, vaccines and other medical treatments. There is also a lot that can be done to enable someone with dementia to live well with the condition. Diagnosing dementia It is very important to get a proper assessment of problems with memory or thinking. They may be caused by a treatable condition such as depression or an infection, rather than dementia. If the cause is dementia, a diagnosis has many benefits. It provides someone with an explanation for their symptoms, gives access to treatment, advice and support, and allows them to prepare for the future and plan ahead. Knowing the type of dementia (eg Alzheimer s disease, vascular dementia) may allow appropriate drug treatments to be offered. There is no single test for dementia. A diagnosis is based on a combination of things: Taking a history - by the doctor. Talking to the person and someone who knows them well about how their problems developed and how they are now affecting their daily life Cognitive tests of mental abilities (e.g. memory, thinking) - simpler tests will be carried out by a nurse or doctor, more specialist tests by a psychologist Physical examination and tests (e.g. blood tests) - to exclude other possible causes of the symptoms A scan of the brain - if this is needed to make the diagnosis.

What can you expect from us? We are working hard to meet the standards identified in the National Dementia Strategy. All people over the age of 75 years will: Be asked the dementia screening question when admitted to the hospital as an emergency. Have a mental assessment, where people identify that they have become more forgetful over a period of 12 months. Have investigations which may include blood tests, CT scan (scan of the brain) and a review of their medicines. Have a letter sent to their GP requesting further review by the Memory assessment team. Where a person already has dementia diagnosed they will be: Identified on the patient status at a glance board with a forgetme-not flower. Provided with a shared care plan to be completed by the patient / relative / carer which will form the basis of a person-centred care plan. Provided with an electronic patient device to provide feedback regarding their hospital experience.

After Diagnosis Receiving a diagnosis of dementia can be a difficult and emotional time. Once you, or someone you are close to receive a diagnosis, there are a number of important issues that you will need to talk about e.g.: Treatments. Staying healthy. Home care services. Day care services. Short breaks (respite care) in a care home or a person s own home. Residential care. Financial and legal affairs. Benefits. Lasting powers of attorney. Advance decisions. Making a will.

Understanding and respecting a person with dementia Living with dementia can have a big emotional, social, psychological and practical impact on a person. Many people with dementia describe these impacts as a series of losses and adjusting to them is challenging. Supporting the person with dementia to remain independent: tips for carers Do things together - try to do things with the person rather than for them when offering assistance. Focus on things the person can do, rather than those they can t. Offer help in a supportive way. Try to be patient, allowing plenty of time for tasks and offering reassurance, praise and encouragement. Break down tasks into smaller, more manageable steps. Try to adapt tasks to take account of particular difficulties. If the person is happy, keep doing the things they enjoy - just differently. Focus more on the process rather than the completion of a task.

Safety in the home Many people with dementia prefer to live at home for as long as possible. But difficulty managing everyday situations can mean people are not as safe at home as they used to be. It is important to find the right balance between the person s independence and them being at unnecessary risk. The person with dementia should, where possible, be involved in decision-making and their consent sought and given about changes. If this is not possible, it is important that those making the decision do so in the person s best interests. There is no such thing as a completely risk-free environment for any of us, and when someone is living with dementia it may be that some minor accidents are inevitable. It is however worthwhile considering: Falls The risk of falls can be minimised by checking the home for potential hazards such as rugs, loose carpets, furniture or objects lying on the floor. If the person has a fall that seems serious, don t try to move them or give them anything to eat or drink. If they have broken a bone they may need an anaesthetic later. Keep them warm and call for an ambulance.

Store dangerous substances safely Dangerous substances, including medicines, should be stored somewhere safe. If the person with dementia is unable to administer their own medication safely, arrangements should be made for someone else to do this. A dosette box could be helpful. These have separate tablet compartments for day of the week and/or times of day such as morning, afternoon and evening. Speak to the GP or pharmacist for advice on ways to manage medication safely and easily. The kitchen Consider fitting an isolation valve to a gas cooker so that the cooker cannot be turned on and left on. Devices are also available for electric cookers. If the person s ability to recognise danger is declining, consider removing potentially dangerous implements such as sharp knives, but place other items for everyday use within easy reach.

Communication Communicating our needs, wishes and feelings is vital - not only to improve our quality of life, but also to preserve our sense of identity. Difficulties with language occur in all forms of dementia but the particular problems experienced by a person will vary according to the type of dementia and level of disability they have. In many instances, language skills will vary from day to day and time to time. Make the most of good days and learn to cope with the bad ones. An early sign that someone s language is being affected by dementia is that they can not find the right words particularly the names of people. The person may substitute an incorrect word, or may not find any word at all.

When communicating with someone with dementia: When possible, if you are rushing or feeling stressed, try to take a moment to calm yourself. Consider what you are going to talk about. It may be useful to have an idea for a particular topic ready, or to ask yourself what you want to achieve from the conversation. Make sure you have the person s full attention. Make sure that the person can see you clearly. Try to make eye contact. This will help the person focus on you. Minimise competing noises, such as the radio, TV, or other people s conversations. Speak clearly and calmly. Speak at a slightly slower pace, allowing time between sentences for the person to process the information and to respond. This might seem like an uncomfortable pause to you but it is important in supporting the person to communicate. Avoid speaking sharply or raising your voice, as this may distress the person. Use short, simple sentences.

Eating and drinking As dementia progresses, eating and drinking can become difficult. People with dementia may struggle to recognise food and drink, which can result in it going uneaten. They may struggle to handle cutlery or pick up a glass as co-ordination becomes difficult. Supporting meal times for people with dementia: Regular snacks or small meals may be better than set mealtimes. Preferences and styles of eating may change. Look for opportunities to encourage the person to eat. If the person with dementia is awake for much of the night then nighttime snacks may be a good idea. Provide food the person likes. Try not to overload the plate with too much food; small and regular portions often work best. Try different types of food, e.g. milkshakes or smoothies. Finger foods are often easier to eat when co-ordination becomes difficult. Positive encouragement and gentle reminders to eat, and of what the food is, may help.

Washing, bathing & mouth care As a person s dementia progresses, they may need more help with everyday activities such as washing and bathing. For most adults, washing is a personal and private activity and so it can be hard to adjust to this change. When you are helping someone with dementia to wash, it is important to be sensitive and tactful and to respect their dignity. Try to make the experience as pleasant and relaxed as possible. Nice-smelling bubble bath or relaxing music can make wash time feel like a treat rather than a chore. Make sure that the room is warm enough for the person to be comfortable. 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.

Moving & walking about Many people with dementia feel compelled to walk about and may leave their homes. Walking is not a problem in itself it can help to relieve stress and boredom and can provide exercise. However, it can be worrying for those around the person and may at times put the person in danger. It is important to find a solution that preserves the person s independence and dignity. People often walk about if they are bored. Many people with dementia simply do not have enough to do. Being occupied brings with it a sense of purpose and self-worth for everyone, and people with dementia are no exception. Try to find ways to keep the person mentally engaged and physically active, whether through playing games or involving them in your daily chores and tasks or hobbies.

Continence A person with dementia may experience difficulties with using the toilet, accidents and incontinence. These problems can be upsetting for the person and for those around them. However, incontinence is not an inevitable consequence of dementia and support is available. If someone has an accident, it is important for carers and friends to: Remember that it is not the person s fault Try to overcome any embarrassment or distaste they may feel Avoid being angry or appearing upset. This may not always be easy. If as a carer you find feelings about incontinence difficult to handle, it is a good idea to talk things through with a health professional. More detailed information on the above subjects and many other issues faced by people living with dementia can be accessed via the: Alzheimer s Society Website www.alzheimers.org.uk/ Useful contact details: Dementia Nurse Specialist at CMFT - 0161 701 0037 Alzheimer s Society National Helpline - 0300 222 1122 Dementia UK - 020 7874 7200 Social Care and Support Manchester City Council www.manchester.gov.uk/socialservices Reproduced with thanks to Salford Royal NHS Foundation Trust Cover design compiled by Emmaline Krause