Coping with dementia1

• Tips for those affected by dementia
• Tips for caregivers
• Tips for caregivers during the late stage of dementia
• Communication Tips for caregivers

There is a lot you can do to help manage the early stages of dementia. This page offers some tips to help the patient maintain his or her independence and to help family members, relatives, and caregivers cope with their responsibilities.

Tips for those affected by dementia

If you have recently been diagnosed with dementia, it is normal to experience a wide range of emotions, such as denial, anger, fear, loneliness, frustration, loss, and/or depression.

Here are some things to keep in mind in order to manage the disease in a way that benefits you and your family:

• Take care of your physical health through exercise, adequate rest, and diet
• Schedule regular medical check-ups with professionals who have expertise in dementia and related issues, such as a geriatricians (e.g. doctor specialised in health care of the elderly). If you feel depressed, seek mental health treatment with a professional who has experience in this area.
• Take your medication as prescribed and avoid making changes to your regimen without medical advice.
• Avoid using alcohol as a coping mechanism. While it may make you feel better and distract you, this is only temporarily. In addition, alcohol could interact with medications or cause additional health or memory or language problems.
• Join a dementia support group where you can connect with others and learn more about the disease.
• If you are still working, seek potential work options, such as a reassignment to a more manageable position, early retirement, or other accommodations.
• Keep the lines of communication open with friends, family, and loved ones. Continue to share your feelings with them. Do not hesitate to ask for help when you need it.
• Organise your belongings in such a way that things are easy to find. Try to put things in the same place every time. Putting labels on drawers and doors can be another helpful way of keeping track of things.
• Continue participating in your favourite activities as long as you can and as long as you still enjoy them. Think of ways to modify these activities to adapt to your changing level of functioning. You may need help from a doctor, a family member, or a friend to do this. For example, if reading a long novel becomes difficult, consider listening to shorter segments on tape.
• Perform difficult tasks at times of the day when you feel you are at your best and allow yourself enough time to complete them. If a task becomes too difficult, do not hesitate to take a break or ask for assistance with it
• Keep a written schedule handy to keep track of appointments, tasks, and medication schedules. Also, make a list of important phone numbers as well as your personal information (where you live, your phone number, and emergency contacts) and keep it with you in case of emergencies.
• Consider keeping a journal to write down, express, and work through your feelings.
• Plan for the future. Decide how you want things to be handled when your disease progresses to the point where you can no longer care for yourself. Communicate your medical preferences to your family - especially the closest one - and make necessary legal and financial arrangements (for instance, appointing trusted person to handle your money and affairs when you can no longer do so). Also consider and discuss where you would like to live if alternative housing arrangements become necessary.

A diagnosis of dementia does not mean that life is over. It means that there will be challenges ahead, and thinking about those challenges now will help prepare those close to you and benefit all of you in the long run.

Tips for caregivers 2

Not only is a diagnosis of dementia difficult for the person with the disease; it also poses significant challenges for those who take care of the patient. Family members or others caring for a person with dementia are often subject to extreme stress. They often feel isolated, alone, and left to their own devices, dealing with the "unknown" and seeing their beloved ones becoming more and more distant and estranged. They may develop feelings of anger, resentment, guilt, and hopelessness, in addition to the sorrow they feel for their loved one and for themselves. Depression is an extremely common consequence of being a full-time caregiver for a person with dementia. The most important thing to remember is that you cannot help someone else without helping yourself first.

The following tips concern the caregiver himself/herself:

• Attend to your own physical and mental health. Research shows that Alzheimer’s Disease (AD) caregivers are often at increased risk for depression and illness, especially if they do not receive adequate support from family, friends and the community. If you are a caregiver, be sure you make time for sleep, exercise, proper nutrition, socialising, and private time. If you are run down, exhausted or socially isolated, you run the risk of becoming physically ill, overwhelmed and/or depressed. Do not hesitate to get outside help in time. The sooner you accept help, the longer you can be a partner to the person with dementia.
• Monitor yourself for signs of burnout (such as anger, anxiety, irritability, depression, social withdrawal, feeling extremely tired, or sleep problems), and/or health problems (such as ulcers, migraines, or high blood pressure). If necessary, seek mental health care from a professional who has expertise in addressing caregiver burnout, depression, and grief.
• Try joining a caregiver support group, which can provide education and emotional support. Such support group can also provide connections to local resources that can help you meet your responsibilities.

Tips to help the patient include:

• Learn as much as you can about the disease as soon as possible. You will be better prepared to handle the variety of challenges associated with dementia if you know what to expect and have some ideas about how other people have handled similar challenges.
• Respect the patient. The basis of the relationship is the unconditional esteem for the patient, the love for him/her, the struggle for the acceptance of this person with his/her illness. Acceptance of the patient and the situation also means setting limits, taking responsibility and leadership, providing orientation. It is, however, necessary to react to their behaviour in an adult manner and not to embarrass the patient.
• Understand the patient. If the efforts to understand wane, there is a risk that people with dementia become objects of nursing and disappear as a person. There are limits here as well: we cannot understand everything and there is not a convenient theory for every change in behaviour. One must try to accept this as well, to accept what cannot be understood.
• Be sincere. Pretending or reacting falsely using friendly facades undermine relationships. People with dementia notice this and reject or retreat.
• Create a reliable daily routine with small rituals. As predictability can be calming, this can help keep your patient more relaxed. Activate the patient in the framework of this routine without too little or too much demand. Existing capabilities should be used if possible because self-esteem relies on their use.
• Let the patient do as much as possible. It may be tempting to do things for the patient, but s/he is more likely to retain his/her self-esteem if s/he is given the chance to do things alone, with support if necessary.
• Keep physical closeness. As the disease progresses, the body very much becomes the focus. Touching hands, gestures, and eye contact, showing your own feelings creates a warm sense of security, closeness and comfort.
• Allow unusual behaviour. Reduce your rejection of bizarre behaviour and take care that your relative does not endanger himself. Resist the impulse to intervene and ask yourself from time to time what is the meaning of a particular type of behaviour and what "pleasure" is behind it.
• Keep the lines of communication open with family, friends, and loved ones. Ask for help when you need it.
• Make sure legal and financial issues are in order, and include the patient with dementia in the decision-making process as much as possible.
• Take an active role in the patient's health care. Form a working partnership with a doctor and other professionals who are experienced in issues related to dementia and other cognitive disorders.
• Plan activities with the patient that you both enjoy and that can be adaptable to the patient's current level of functioning, such as walking, gardening, baking, listening to music, singing, dancing, or playing cards. Relax the rules of the activity and re-define what is "appropriate". For instance, if the patient wants to help with household chores, let him/her fold a basket of laundry but do not worry about whether things are folded correctly or about the time it will take. What is important is that he is he/she in an activity that makes him/her feel useful.
• Keep the home well-lit using soft natural light. Avoid fluorescent lights, which can agitate people with dementia.

Tips for caregivers during the late stage of dementia3

As dementia progresses, daily activities are likely to become more and more difficult for the patient to perform. Some behaviour, such as wandering, occurs more and more frequently and may endanger the person with dementia. Here are some tips related to these aspects.

During the late stage of AD, patients will increasingly become less interested in personal hygiene, and they will forget how to comb their hair, clean their teeth, and/or change their clothes. Taking care of personal hygiene is often more difficult for relatives than for professional carers as the patient may feel less embarrassed if they are being washed by “strangers”.

Personal hygiene can be used as a way to communicate with the patient by creating a relaxed atmosphere and taking part in this daily routine. Hygiene is not just about cleaning but can involve using lotions to massage and keep the skin moisturised and supple.

• Try to ensure the same sequence of events takes place every day.
• Pay attention to a regular routine which should mimic former habits.
• If possible, allow the patient to wash themselves. This will benefit their sense of self-esteem.
• Demonstrate what you want the patient to do.
• Keep physical contact with the patient, for example, keep one hand on the patient's body whilst washing him/ her.
• Use bath and shower seats, handrails and bath aids and non-slip mats where possible.
• Make the bathing/shower experience relaxing and enjoyable.
• Pay attention to any sign of redness on the skin, as this is the first stage of a bedsore or ulcer and make sure the patient moves/is moved frequently if confined to bed and use mild soap.
• Hair care can be problematic. Gentle combing or brushing is often experienced as pleasant.
• Do not use aggressive mouthwash for oral hygiene because it is often swallowed. Camomile tea is a good alternative.
• Try finding a way for the patient to keep shaving, because it is an important routine for men

People with AD can often no longer cope with the sequence of getting dressed or undressed. They get tangled up in their clothes, don't know what item of the clothing to put on first and don't always understand why they need to change their clothes.

A few steps can be taken to make this process easier:

• Lay out the clothes in the right sequence and focus the attention on the next step. Demonstrate what comes next.
• Try buying similar underwear and exchange it discretely if changing underwear becomes a problem.
• Buy comfortable clothes that are easy to put on and wash but that are cherished by the person who has to wear them.
• Buy shoes that are easy to put on, comfortable, non-slip and preferably than can be done up easily (for example, with a Velcro strip).

Meals often provide a sense of atmosphere and community and can be accompanied by pleasant activities and routines to amuse and occupy the patient, such as laying or clearing the table. Maintaining eating habits is also important for the well-being of the patient.

Some people suffering from dementia will eat too much food because they can't remember their last meal or enjoy eating, and therefore will start gaining weight. Others lose weight as they don't enjoy the food or have forgotten how to use cutlery. In addition, chewing or swallowing may physically become a problem. However, eating and feeding don't have to be a problem:

However, eating and feeding don't have to become a problem:

• Try to sweeten the food artificially - also meat and vegetables. The patient may find this more tempting.
• If people have problems choking when drinking, you may want to add some thickening substance to their drinks (for example, adding yoghurt to milk).
• Sweet, porridge-like food is recommended. Hard food should be avoided.
• Offer several small meals throughout the day, also before bedtime
• Simple, well-known dishes are preferred
• Large handles, non-slip plates and spoons allow the patient to feed themselves. Don't be over-concerned if they are using their fingers to eat or play with the food as their abilities decrease.
• Dentures must fit well to avoid pain and pressure while eating. Do not use aggressive mouthwash for oral hygiene because it is often swallowed. Camomile tea is a good alternative.
• Make sure the patient sits upright when eating to avoid problems with swallowing
• Even if the patient is confined to bed, can no longer swallow and is fed via a stomach tube, try nevertheless to stimulate the mouth area: with small sponges (e.g. soaked in formerly favoured drinks or milk) you can stimulate a sucking and swallowing reflex; then you might be able to administer fluid using a straw or - even if it seems strange - a milk bottle.
• Pay attention to sufficient fluid intake, 1 to 2 L daily.

Gradually people suffering from dementia will lose their ability to control their toileting, and incontinence occurs (i.e. loss of bladder/bowel control). Sometimes patients are unable to find their way to the toilet or can no longer clean themselves. Incontinence is often a stressful problem for the caregiver and quite often this gives rise to the discussion whether a patient may need to be moved to a home.

There are some measures you can take at home and factors to take into account:

• Clearly mark the toilet (have a colourful door with a symbol)
• Make going to the toilet part of the daily routine.
• The inside of the toilet bowl should be dark (e.g. by colouring the water). A totally white toilet does not allow orientation, especially for men while urinating in a standing position.
• Restlessness sometimes indicates a need to go to the toilet.
• Obtain information on nappies and sanitary towels in specialist shops and use a mattress protector.
• Avoid the use of a catheter or tube, even at an advanced stage as this may cause infection.
• Pay attention to skin care as faeces and urine attack the skin.
• Don't dramatise an 'accident', distract the affected person and clean up discretely.

Progressive rigidity in old age accompanied by walking disorders leads to an increasing number of falls. This often results in a patient being confined to bed. Although falls can't always be avoided, removing obstacles such as cables and slippery rugs and providing good shoes and installing hand-rails may prevent some falls. Stairs, doorsteps and ramps are danger zones: people with dementia suffer from a disturbed sense of vibration whilst walking, therefore misjudgements regarding slope and depth occur. White markings might help to prevent them from walking down the stairs on their own.

As older people need less sleep, a shift in sleeping patterns occurs and increased agitation may lead to walking around in the evening ("sundowning"). A lot of rest and frequent naps during the day are not beneficial. Provide evening and bedtime rituals. Make late afternoons and evenings as simple and relaxing as possible. Reduce distractions, unscheduled activities, and behaviours that could be done at a different time of the day (e.g. switch to bathing in the morning) and keep rooms well-lit until bedtime. Exercise during the day may help overcome this problem somewhat, rather than resorting to calming medication, as this will reinforce the sleep reversal.

The whole subject of dementia and sexuality is still taboo, and many people find sexual demands of people with mental disorders grotesque. Sexuality is important for people with few other means of expression. Dementia sufferers often show an increased sexual drive. Bear in mind that the patient might be living in 'another time' and considers him/herself to be younger. Sexuality is also a source of self-esteem and power. Distract the person gently if public masturbation occurs and lead him/her away. Make sure to talk to someone you can trust or a professional if you find you are having problems dealing with the patient's sexual desires.

Communication Tips for caregivers4

As dementia progresses, it becomes more and more difficult for dementia sufferers to express their thoughts and feelings and to understand what is being communicated to them.

Here are some tips to help enhance communication with the dementia patient:

• Speak slowly, not too loud, using a low-pitched voice
• Face the person when you are speaking to them
• Use short, familiar words and short, simple sentences that clearly express what you want to say
• Allow sufficient time to respond. If the person does not respond, repeat your question with the same wording as before
• Ask only one question or give one instruction at a time. Break tasks down into smaller steps that are more manageable. For instance, even activities as simple as tooth brushing are made up of many smaller tasks, such as picking up the toothpaste, taking off the cap, picking up the toothbrush, putting toothpaste on the brush, etc.
• Give positive instructions; avoid saying "don't" or giving negative commands. For example, instead of saying "Don't go in that room", try saying "Let's go over here".
• Avoid questions that require a lot of thought, memory, and words
• Avoid instructions that require the patient to remember more than one action at a time (for example, avoid questions of the type "what film did you see last night?" or "What did you do this morning?")
• Avoid arguing or disagreeing with the patient. Since dementia affects reason and logic, and arguing with someone requires logic, arguing is pointless
• Address the feelings of a person with dementia rather than focusing on the facts or accuracy of what the person is saying. Avoid reorienting the person to reality if not necessary. For instance, if someone with dementia thinks that the year is 1970, and this is not hurting anyone, restrain from trying to convince them it’s not. Instead, try to identify feelings related to 1970 by asking more about it.
• Keep things more peaceful and simple. Try not to have too many people visit the patient simultaneously. Communication is often easier if the environment is calm, simple, safe, and quiet.