Advice for those Caring and Supporting People with Dementia
Often people with dementia want to go home; this is not a tangible home, it is more like a home within their own perception, possibly from a childhood memory.
It is believed the reason for this may be because they are confused, they do not know their environment or the people around them. They are frightened. This fear can be triggered by delusions, by physical impairments, excessive demands, arguments, anger and even by closed doors and cupboards. Agitation can also be caused by narcoleptic medication.
When agitated, the person may start walking or running away, which in itself is not a problem unless they are at risk of physical injury to themselves or others; for example, wandering into roads, or traffic. All of which can test the endurance limits of those caring for them.
People with dementia often remember dance steps; they usually enjoy dancing and music. This should be encouraged as it promotes contact with other people. Social circles involving enjoyable activities bring joy, happiness and laughter into their lives and develop interaction and a sense of belonging and enhance their quality of life.
Some Things to Remember
Movement causes the release of endorphin's, which creates positive moods and is a natural pain depressant. Therefore, if possible, create safe areas with ample space for the person to move about safely, especially if they have a compulsion to run (a fenced garden is ideal).
Observe what they are doing and do not be surprised if they return having given up the exercise in a relatively short time. If possible, exercise with them, like any other activity it is better shared. Leave doors and cupboards open wherever possible and allow them to rummage through their own belongings. Be prepared to search for things they have lost. These items may seem trivial to you but can be vitally important to them.
Use distraction methods to keep them occupied. Include them in as many of the normal daily activities as possible. Remember, the more free time they have, the more boredom will increase and they will become frustrated and want to leave.
Successful activities support a person's sense of self, bringing out their skills, memories and habits, and reinforce the person's sense of being in a group, which can provide friendship, mutual support and spiritual connection.
Any number of activities may be beneficial depending on the individual, and different activities may affect certain symptoms but not others, for example, music may improve eating in some people but not others. Interest may be stimulated by introducing a former hobby of the person, from gardening, cooking, painting and drawing, to singing, playing music instruments or listening to music etc. Routine is essential. Activities that are done regularly, perhaps even at the same time every day if possible, may help establish routine and increase the person's sense of stability. Always make sure that all activities you provide are appropriate to the individual.
Consider the person's age and culture. Activities must reflect their likes and dislikes and maximize the possibility of individual success. Do not make activities unnecessarily complex nor childish or too simplistic.
Lack of Motivation
When a person resists doing an activity in the first instance, use calm reassurance to re-stimulate their interest. However, when the person strongly resists doing the activity or activities do not try to pressure them into continuing. Allow them to stop if they have totally lost interest. Divert them to something else. Encourage their participation in more pleasant tasks. Take them out or let them listen to music or use other activities to maintain stimulation.
For those with dementia, keeping a normal sleeping and waking pattern is difficult. To help maintain the normal rhythm encourage the person to participate in different activities throughout the day, especially physical outdoor ones.
Afternoon naps etc. should be avoided unless the person is feeling unwell. These strategies help reduce agitation and wandering in the evenings (known as sun downing).
Common Feelings Experienced by Carers
Carers are likely to experience a range of very different, and often quite extreme feelings. This is particularly difficult because as dementia gradually causes the person's abilities and personality to change. With those changes, the nature of relationships will also change.
Depressions is a common consequence of being a full-time caregiver for a person with dementia and if it becomes serious it needs to be treated by a doctor or psychiatrist.
Guilt is also quite a common feeling among carers. This may include feelings of guilt for the way the person with dementia was treated in the past, guilty at feeling embarrassment from the person's odd behaviour, guilty for losing their temper, or guilty for not wanting the responsibility of caring. If the person with dementia goes into hospital or residential care, carers can feel guilty that they have not kept them at home for longer, even if everything that could be done has been done. They might feel guilty about past promises, such as 'I'll always look after you', which cannot be met.
Grief and Loss - Grief is an emotional response to loss. The loss could be a loss of relationship, moving house, loss of good health, divorce or death. When someone develops dementia, their family, carers and significant others are faced with the loss of the person they used to know and the loss of a relationship. People caring for partners are also likely to experience grief at the loss of the future that was planned together.
Anger - It is natural for carers to feel frustrated and angry. They might be angry at having to be the caregiver, angry with others who do not seem to be helping out, angry at the person with dementia for difficult behaviour, or angry at support services. Sometimes they might feel like shaking, pushing or hitting the person with dementia.
When planning activities for a person with Dementia it is important to ensure their safety and comfort, but it is also important to balance safety with autonomy and risk taking.
Sometimes carers find it difficult to balance what they see as their duty of care with the acknowledgement that people need to take risks as part of normal living.