Alzheimer's Dementia: Caregiver's Guide
Table of Content
- What is Alzheimer's Disease?
- What is Dementia?
- What Causes Alzheimer's?
- What Happens in the Brain ?
- How Does AD Progress Over a Period of Time?
- What is Caring and Who are the Carers or …
- What are the Challenges Faced by a Caregiver?
- Tips for Caregivers
- Dealing with the Diagnosis of AD in a Loved One
- Communicating with a Patient with AD
- Bathing and Dressing a Patient with AD
- Eating Trouble and Getting a Patient with AD to …
- Activity and Exercise for a Patient with AD
- Outings and Holidays with a Patient of AD
- Dealing with Incontinence
- Dealing with Sleep Problems
- Dealing with Other Psychiatric Problems (Delusion …
- Dealing with Wandering
- Home Safety Tips
- Visiting Your Doctor
Alzheimer's disease is an irreversible, progressive brain disease that slowly destroys memory and thinking skills, and eventually even the ability to carry out the simplest tasks. In most people with Alzheimer's, symptoms first appear after age 60.
Dementia is the loss of cognitive functioning - thinking, remembering, and reasoning - to such an extent that it interferes with a person's daily life and activities. Alzheimer's disease is the most common cause of dementia among older people.
Scientists don't yet fully understand what causes Alzheimer's disease, but it is clear that it develops because of a complex series of events that take place in the brain over a long period of time. It is likely that the causes include genetic, environmental, and lifestyle factors.
- Initial stages:
- Memory problems are one of the first signs of Alzheimer's disease- failure to remember recent events, names of familiar people or objects, frequently getting lost in familiar surroundings, rouble handling money and paying bills,
- Asking the same question repeatedly.
- Inability to organize daily activities-taking longer to complete normal daily tasks, poor judgment
- Small mood and personality changes.
- In the middle and later stages of AD, people need help with everyday activities. Memory loss and confusion increase, and people begin to have problems recognizing family and friends. They may be unable to learn new things, carry out tasks that involve multiple steps (such as getting dressed), or cope with new situations. They may have psychiatric symptoms and may behave impulsively.
- Eventually they need total care - People with severe Alzheimer's cannot communicate and are completely dependent on others for their care. Near the end, the person may be in bed most or all of the time as the body shuts down.
AD slowly attacks the nerve cells in all parts of the cortex of the brain and some surrounding structures. Thus, it impairs a person's abilities to control emotions, recognize errors and patterns, coordinate movement, and remember. Ultimately, a person with AD loses memory and many other mental functions.
The changes that take place in the brain include the following:
In the brain of an AD patient are found many abnormal clumps (called amyloid plaques) and tangled bundles of fibers (called neurofibrillary tangles). Plaques and tangles in the brain are two of the main features of Alzheimer's disease. The third is the loss of connections between nerve cells (neurons) in the brain.
Although we still don't know what starts the Alzheimer's disease process, we do know that damage to the brain Although we still don't know what starts the Alzheimer's disease process, we do know that damage to the brain begins as many as 10 to 20 years before any problems are evident. Tangles & plaque begin to develop deep in the brain. As more and more plaques and tangles form in particular brain areas, healthy neurons begin to work less efficiently. Then, they lose their ability to function and communicate with each other, and eventually they die. This damaging process spreads to a nearby structure, called the hippocampus, which is essential in forming memories. As the death of neurons increases, affected brain regions begin to shrink. By the final stage of Alzheimer's, damage is widespread and brain tissue has shrunk significantly.
AD is a progressive disease. The rate at which the disease progresses varies from person to person. It begins as a mild memory problem and ends with severe brain damage, affecting memory, thinking and language.
Since AD affects the memory, patients with AD need some care from others in order to carry out their daily activities in the initial stages, Later on, as the disease progresses, they may be totally dependent on others even to carry out the basic activities of daily life.
Carers are people who take care of other adults, most often, they are the parents or spouses of the patient. About 80% of patients with AD are cared for by family members, who often lack adequate support, finances, or training for this difficult job.
Caring for a patient with AD at home is a difficult task.
Each day will throw up new challenges in terms of the patient's behaviour and level of activity. Caring for AD patients may leave the caregivers with no time for themselves such that they may show signs of physical and mental exhaustion and ill-health.
If you are the caregiver, you must:
- Take care of your own health well so that you can attend to the AD patient properly;
- Simplify and organize your own lifestyle such that you can find the time and resources to care for the patient;
- Be willing to ask for or accept help from other family members or friends;
- Take one day at a time rather than worrying about the future;
- Be positive and optimistic and feel good about whatever the person in your care is able to do rather than feel bad about what he/she is unable to do;
- Understand that the patient is not being difficult on purpose; and
- Remember that you cannot control the disease process and that you are doing your best.
Learning that your loved one has AD can be stressful, frightening and devastating. The following tips will help you in planning for the care-giving process:
- Seek answers to the questions on AD from the doctor and find out what treatments might work best to relieve the symptoms or address the behavior problems.
- Contact support organizations (such as www.silverinnings.com) that offer counseling, training of family members, and training of professional care givers.
- Study your day-to-day activities to see if you can develop a routine that makes things go more smoothly. If there are times of the day when the person with AD is less confused or more cooperative, plan your routine to make the most of those moments. Keep in mind that the way the person functions may change from day to day, so try to be flexible and adapt your routine as needed.
- Consider using adult day care or respite services (if available in your area and if financial resources permit) to ease the day-to-day demands of care-giving. These services allow you to have a break while knowing that the person with AD is being well cared for.
- Start planning for the future, including getting financial and legal documents in order, investigating long-term care options, and determining what services are covered by the health insurance that you have.
Since AD affects memory, thinking and language, trying to communicate with an AD patient can be difficult - both in understanding what the patient communicates and making the patient understand what you want to communicate. Hence, keep in mind the following:
- Choose simple words and short sentences and use a gentle, calm tone of voice.
- Avoid talking to the patient like a baby or as if he or she weren't there.
- Minimize distractions and noise-such as the television or radio-to help the patient focus on what you are saying.
- Make eye contact and call the person by name, making sure you have his or her attention before speaking.
- Allow enough time for a response. Be careful not to interrupt.
- If the patient is struggling to find a word or communicate a thought, gently try to provide the word he or she is looking for.
- Try to frame questions and instructions in a positive way.
- Be open to the person's concerns, even if he or she is hard to understand.
Some patients with AD may not mind help from others during bathing, but others may find it a frightening or confusing experience. Understand this and be gentle, patient and calm. In order to help make bath time better for both of you, consider the following tips:
- Plan the bath for the time of day when the person is most calm and agreeable. Be consistent. Try to develop a routine.
- Tell the person what you are going to do, step by step, and allow him or her to do as much as possible.
- Prepare in advance. Make sure you have everything you need ready and in the bathroom before beginning.
- Test the water temperature before beginning the bath or shower.
- Minimize safety risks by using a handheld showerhead, shower bench, grab bars, and nonskid bath mats. Never leave the person alone in the bathroom.
- Try a sponge bath. Bathing may not be necessary every day. A sponge bath can be effective between showers or baths.
Likewise, for someone with AD, getting dressed may pose problems in respect of choosing what to wear, putting on or taking off the clothes, and struggling with buttons and zippers, sash, etc. Minimizing these difficulties will help:
- Try to have the person get dressed at the same time each day so he or she will come to expect it as part of the daily routine.
- Encourage the person to dress himself or herself to whatever degree possible. Plan to allow extra time so there is no pressure or rush.
- Allow the person to choose from a limited selection of dresses. If he or she has a favourite dress, consider buying several identical sets.
- Arrange the clothes in the order they are to be put on to help the person move through the process.
- Hand the person one item at a time or give clear, step-by-step instructions if the person needs prompting.
- Choose clothing that is comfortable, easy to get on and off, and easy to care for Elastic waists and Velcro® enclosures minimize struggles with buttons and zippers.
Getting an AD patient to eat can be a challenge. While some AD patients want to eat all the time, others need to be coaxed to eat properly. Consider the mealtime as an opportunity for interaction with the patient. Try to be patient and avoid rushing, and be sensitive to confusion and anxiety.
The following tips will be handy for you:
- Aim for a quiet, calm, reassuring mealtime atmosphere by limiting noise and other distractions.
- Maintain familiar mealtime routines, but adapt to the person's changing needs.
- Give the person food choices, but limit the number of choices. Try to offer appealing foods that have familiar flavours, varied textures, and different colours.
- Serve small meal portions or several small meals throughout the day. Keep healthy snacks or milkshakes handy. Remember that in the earlier stages of dementia, there is a possibility of overeating.
- Choose plates, bowls, and spoons that enable the patient to be fairly independent. If the person has trouble using utensils, use a bowl instead of a plate, or offer utensils with large or built-up handles. Use straws or cups with lids to make drinking liquids easier.
- Encourage the person to drink plenty of fluids throughout the day to avoid dehydration.
- As the disease progresses, be aware of the increased risk of choking because of chewing and swallowing problems.
- Maintain routine dental checkups and daily oral health care to keep the mouth and teeth healthy.
In order to keep the patient with AD usefully occupied during the day, it is recommended that you indulge the patient in activities he or she is aware of rather than trying to teach something new. Remember:
- Do not expect too much. Simple activities often are best, especially when they use current abilities.
- Help the person get started on an activity. Break the activity down into small steps and praise the person for each step he or she completes.
- Watch for signs of agitation or frustration with an activity. Gently help or distract the person to something else.
- Incorporate activities the person seems to enjoy into your daily routine and try to do them at the same time each day.
- Try to include the person with AD in the entire activity process e.g. at mealtimes, encourage the person to help prepare the food, set the table, pull out the chairs, or put away the dishes. This can help maintain functional skills, enhance feelings of personal control, and make good use of time.
Incorporating exercise into the daily routine has benefits for both the person with AD and the caregiver in respect of improving health, promoting better sleep and providing an opportunity to interact with each other.
- Indulge in some physical activities that you both enjoy e.g. walking, swimming, dancing, or gardening.
- Determine the time of day and place where this type of activity would work best.
- Be realistic in your expectations. Build up slowly, e.g. just starting with a short walk in your compound, and then progressing to the end of your street.
- Be aware of any discomfort or signs of overexertion. Talk to the person's doctor if this happens.
- Allow as much independence as possible.
Outings or holidays are a much-needed break for the caregivers. However managing the AD patient during such times can impose extra demands on time and energy. The answer is to find a balance between rest and activity.
- While following the family traditions, include the person with AD as much as possible.
- Recognize that things will be different, and be realistic about what you can do.
- Encourage friends and family to visit the patient with AD. Limit the number of visitors at one time, and try to schedule visits during the time of day when the person is at his or her best.
- Avoid crowds, changes in routine and strange places that may cause confusion or agitation.
- Do your best to enjoy yourself. Try to find time for the holiday things you like to do.
- Ask a friend or family member to spend time with the person while you are out.
- At larger gatherings such as weddings or family reunions, try to have a space available where the person can rest, or be alone, or spend some time with a smaller number of people, if needed.
As the disease progresses, many people with AD may experience incontinence or the inability to control their bladder and/or bowels. Incontinence can be upsetting to the person and difficult for the caregiver. Sometimes incontinence is due to physical illness, so be sure to discuss it with the person's doctor.
- Have a routine for taking the person to the bathroom and stick to it as closely as possible. For example, take the person to the bathroom every 3 hours or so during the day. Don't wait for the person to ask.
- Watch for signs that the person may have to go to the bathroom, such as restlessness or pulling at his/her clothes. Respond quickly.
- Be understanding when accidents occur. Stay calm and reassure the person if he or she is upset. Try to keep track of when accidents happen to help plan ways to avoid them.
- To help prevent nighttime accidents, limit certain types of fluids - such as those with caffeine - in the evening.
- If you are going to be out with the person, plan ahead. Know where rest-rooms are located, and have the person wear simple, easy-to-remove clothing. Take an extra set of clothing along in case of an accident.
While a caregiver may find it easy to get to sleep owing to exhaustion, it may not be so for a person with AD. Many people with AD become restless, agitated and irritable around dinner time. Getting the person to go to bed and stay there may require some advance planning.
- Encourage exercise during the day and limit daytime napping, but make sure that the person gets adequate rest during the day because fatigue can increase the likelihood of late-afternoon restlessness.
- Try to schedule physically demanding activities earlier in the day. For example, bathing could be done in the morning, or the largest family meal could be served at midday.
- Set a quiet, peaceful tone in the evening to encourage sleep. Keep the lights dim, eliminate loud noises, and even play soothing music if the person seems to enjoy it.
- Try to keep bedtime at a similar time each evening. Developing a bedtime routine may help.
- Limit caffeine (tea, coffee and cola beverages).
- Use night-lights in the bedroom, hall, and bathroom if the darkness is frightening or disorienting.
As the disease progresses, a person with AD may experience hallucinations and/or delusions. Hallucinations are when the person sees, hears, smells, tastes or feels something that is not there. Delusions are false beliefs that the person thinks are real.
- Sometimes, hallucinations and delusions are signs of physical illness. Keep track of what the person is experiencing and discuss it with the doctor.
- Avoid arguing with the person about what he or she sees or hears. Try to respond to the feelings he or she is expressing. Comfort the person if he or she is afraid.
- Try to distract the person with another topic or activity. Sometimes moving to another room or going outside for a walk may help.
- Turn off the television set when violent or disturbing programmes are on. The person with AD may not be able to distinguish television programming from reality.
- Make sure the person is safe and does not have access to anything he or she could use to harm anyone.
- Discuss with the doctor any illness the person has had or medicines he or she is taking. Sometimes, an illness or medicine may cause hallucinations or delusions.
Keeping the person safe is one of the most important aspects of caregiving. Some people with AD have a tendency to wander away from their home or their caregiver. Knowing how to limit wandering can protect a person from getting lost.
- Make sure that the person carries some kind of identification or wears a medical bracelet.
- Notify neighbours and local authorities in advance that the person has a tendency to wander.
- Keep a recent photograph or videotape of the person with AD to assist police if the person goes missing.
- Keep doors locked. Consider a keyed deadbolt or an additional lock high up or down low on the door. If the person can open a lock because it is familiar, a new latch or lock may help.
Caregivers of people with AD often have to look at their homes through new eyes to identify and correct safety risks. Creating a safe environment can prevent many stressful and dangerous situations.
- Install secure locks on all outside windows and doors, especially if the person is prone to wandering. Remove the locks on bathroom doors to prevent the person from accidentally locking himself or herself in.
- Use childproof latches on kitchen cabinets and anyplace where cleaning supplies or other chemicals are kept.
- Label medications and keep them locked up. Also make sure that knives, lighters and matches, and guns are secured and out of reach.
- Keep the house free from clutter. Remove carpets and anything else that might contribute to a fall.
- Make sure that the lighting is good both inside and outside the home.
- Be alert to and address kitchen-safety issues, such as the person forgetting to turn off the stove after cooking. Consider installing an automatic shut-off switch on the stove to prevent burn accidents or a fire.
- Be sure to secure or put away anything that could cause danger, both inside and outside the home.
It is important that the person with AD receives regular medical care. Advance planning can help the trip to the doctor's clinic go more smoothly.
- Try to schedule the appointment for the person's best time of the day. Also, find out from the clinic staff as to what time of day the clinic is least crowded.
- Let the clinic staff know in advance that this person may be confused because of AD. Ask them for help to make the visit go smoothly.
- Don't tell the person about the appointment until the day of the visit or even a while before it is time to go. Be positive and matter-of-fact.
- Bring along something for the person to eat and drink and any things (e.g. books or magazines) that he or she enjoys.
- Have a friend or another family member go with you, so that one of you can be with the person while the other speaks with the doctor.
- Take along a brief note listing the person's medical history and current medications.