Living with and caring for a person with dementia
Caregiving can be very difficult at times. However, there are ways to deal with the situation. Here are some tips that have worked for other caregivers. The subjects of these tips are:
- Maintaining dignity
- Establishing routines
- Supporting independence
- Avoiding confrontation
- Simplifying tasks
- Improving safety
- Keeping active
- Communicating
- Memory aids
Maintaining dignity
"The person with dementia is an individual with feelings - treat them with respect and dignity."
Remember that the person you care for is still an individual with feelings. Dementia affects people in different ways. In the early stages of the disease, the person may be aware that they are struggling with everyday tasks they once found easy.
What you and others say and do can be disturbing. Avoid discussing the person's condition in his or her presence.
Telling a person with dementia their diagnosis, requires sensitivity and skill. Your Alzheimer association or doctor will be able to give you advice about this.
Establishing routines
"A routine decreases the decisions you need to make and can provide security for the person with dementia."
A routine decreases the decisions you need to make and can provide security for the person with dementia. Keeping a routine can also help prompt the person into remembering what they are meant to be doing, bringing order and structure to confused daily life. For example:
- a daily routine, which keeps the person active, may help them sleep at night
- regular toileting may reduce the chance of accidents occurring
- a warm bath before bed
Although a routine can be helpful, keep things as normal as possible. As much as the changing condition will allow, try to treat the person as you did before the disease.
Supporting independence
"Encouraging independence helps maintain self-respect and decreases your burden."
The person with dementia should be encouraged to remain independent for as long as possible. This helps maintain their self-respect and decreases your burden.
If the person likes to go shopping on their own, and can still go out and return home without getting lost, allow them to do so. Make sure that they have appropriate identification and details of where they live. If you notice patterns in their visits to shops, it might be worth explaining the person's problem to shop managers and assistants. This could avoid any confrontation or distress for everyone involved.
Don't discourage the person from keeping pets, as this can provide companionship and help keep them active. If the person cannot look after the pet, then try to make arrangements where the person can still see the pet on a regular basis.
Avoiding confrontation
"Don't draw attention to failure and avoid confrontation by staying calm."
Any type of conflict causes unnecessary stress on you and the person with dementia. Due to the nature of the illness, people with dementia will invariably forget or deny they have done something wrong or will behave badly. It is important that you don't forget that this is a problem caused by the illness.
Avoid drawing attention to failures and maintain a calm composure. If the person with dementia does not know they have done something wrong, they will automatically be defensive if confronted by you. This will only upset them and can make the situation worse. Remember it is the disease's fault, not the person's.
Simplifying tasks
"Avoid confusion and stress by keeping things simple."
Try to make things simple for the person with dementia. Don't offer too many choices, as this may confuse and upset them. For example, in the early stages of the disease, they may be able to dress themselves. But, as the disease progresses, you will need to guide them and, eventually, clothe the person yourself.
Similarly with eating or washing, the person may not recall how to do these things. You will need to simplify these daily tasks.
Having to simplify daily routines can be very frustrating for you both. Remember it is not the person's fault, but an effect of the dementia.
Improving safety
"Make your home as safe as possible."
As dementia progresses, loss of physical coordination and memory increases the chance of injury, so you should make your home as safe as possible.
Common hazards include loose or worn carpets, polished floors, broken or loose stair railings, trailing electrical cables and clutter. Trying to avoid accidents is the main goal, and if anything can be moved or made safer, then it is worth doing.
If the person with dementia does fall, is in pain, and you are unable to help them up, try not to panic. Keep calm, make the person as comfortable as possible, explaining what you are doing (e.g. calling the doctor). Once help is on the way, continue reassuring the person and keeping them comfortable.
Keeping active
"Keeping active helps enhance dignity, self-worth and maintains physical and mental capabilities."
Some planned activities can enhance a person's sense of dignity and self-worth by giving purpose and meaning to life, as well as maintaining their existing physical and mental capabilities.
Consider taking daily walks with the person with dementia. These will keep you both fit and also provide plenty of stimulation for conversation. Physical activity may also help a person to sleep better at night.
If sociable, the person should be encouraged to continue going out to restaurants or bars. Invite friends and relatives around, although avoid large gatherings, as these may be difficult for the person to cope with. A person may gain satisfaction from using skills related to a previous occupation or hobby, for example, gardening or house-keeping.
As the disease progresses it will be harder to keep both the person's mind and body active, and his or her likes, dislikes and abilities may change over time. This will require you, the caregiver, to be observant and flexible in planning activities.
Communicating
"People whose language becomes impaired rely more on other senses, such as touch and sight."
Communication becomes increasingly difficult as the disease progresses. It may be helpful if you:
- make sure the person's senses - such as eyesight and hearing - are not impaired. For example, spectacles may no longer be of the right prescription, or a hearing aid may not function properly
- speak clearly, slowly, face to face and at eye level
- show love and warmth through hugs, if this is comfortable for the person
- pay attention to the person's body language - people whose language is impaired communicate through non-verbal means
- be aware of your own body language
- find out what combination of word reminders / prompting words, guidance and demonstration is needed to communicate effectively with the person
- make sure you have the person's attention before speaking
Memory aids
"Use memory aids to help the person remember and avoid confusion."
One of the main problems with dementia is the failure of short-term memory. This means that people can forget what has just happened to them. For example, they may forget that they have just eaten lunch and may ask for lunch again.
A useful way of helping someone cope with memory loss is to create personalised 'memory joggers', such as message boards, handy lists and instruction sheets.
- Keep familiar objects in their usual places, where they can be easily found.
- Make sure watches and clocks show the correct time.
- Indicate today's date on any calendars, perhaps by marking off the days as they pass.
- Put up a message board in a prominent place and establish a habit of using it.
- Make a list of the day's activities and put it in a place where it can be easily found. Encourage the person with dementia to refer to it often and to tick off each activity as it is completed.
- If the person with dementia has to be left alone while you go out, leave a clear note saying where you have gone and when you are due back. Try to establish a regular pattern so that your absences are part of a routine.
- Put up photographs of family members and close friends, all clearly named. Or add names to pictures in an album and encourage the person to look at them often.
Research suggests that gently encouraging a person with dementia to use their brain may help them. Make sure that he or she is not overwhelmed by mental exercises such as reading, playing games, painting - which could precipitate a crisis as the person realises that he or she can no longer do simple things. With this limitation in mind, there is probably no harm, and possibly some benefit, in maintaining an environment that provides stimulation.
The loss of short-term memory can be very distressing. Rather than reminding people with dementia of what they have just done, it may be more useful to try and enjoy things together at the time of doing them. This avoids upsetting both you and the person with dementia.
Memory aids will not be so useful in the later stages of dementia.