Rights
Every person diagnosed with Alzheimer’s disease, or a related disorder, deserves the following rights:
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To be informed of one’s diagnosis.
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To have appropriate, ongoing medical care.
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To be productive in work and play for as long as possible.
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To be treated like an adult, not like a child.
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To have expressed feelings taken seriously.
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To be free from psychotropic medications, if possible.
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To live in a safe and structured environment.
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To enjoy meaningful activities that fill each day.
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To be outdoors on a regular basis.
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To have physical contact.
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To be with individuals, who know one’s life story, including one’s cultural and religious traditions.
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To be cared for by individuals who are well-trained.
Anybody providing care to an individual that has been diagnosed with Alzheimer’s Disease, whether they are a professional caregiver, spouse, family member or friend, needs to ensure that the above rights are fulfilled.
Promoting a Caring Culture
Care Culture 1
The new culture (N) of Dementia care outlined below, describes how care workers should go about their work when working with clients who have Dementia. Note how it contrasts with the old culture (O).
O1
Dementias are diseases of the central nervous system. Personality and identity are destroyed.N1
Dementing illness should be seen as a form of disability. How a person is affected depends on the care received.O2
The people with the best knowledge are doctors and brain scientists.N2
The people with the best knowledge are skilled and insightful caregivers.O3
Research is focused on a medical breakthrough. Until that comes, there is not much we can do for the person with Dementia.N3
There is a great deal we can do through human caring, insight and skill. This is the most urgent matter for research.
Care Culture 2
O4
Caregiving is concerned with providing a safe environment, meeting basic needs, and giving competent physical careN4
Caregiving is concerned with the maintenance and enhancement of personhood. Providing a safe environment, meeting basic needs, and giving physical care are only part of the care of the whole person.O5
It is important to understand the person’s impairments, especially those of cognition. The course of a dementing illness can be charted in stages of decline.N5
It is important to understand the person’s abilities and tastes. There are as many manifestations of Dementia as there are persons with Dementia.O6
Problem behaviors must be managed and changed skillfully and efficiently.N6:
So-called problem behaviors should be considered primarily as attempts to communicate. It is necessary to seek to understand the “message” and meet a comfort need.-
O7
We should set aside our own concerns, feelings, and vulnerabilities and get on with the job of caregiving in a sensible, effective way. -
N7
We should be in touch with our concerns, feelings and vulnerabilities and use them as positive resources for our caregiving.
Dementia Care Rules
Inside Dementia – Exercise:
At times, it can be quite difficult for care workers to empathize with a patient with Dementia. Let’s take some time to complete this exercise that could help you see Dementia from a different perspective.
Imagine a future in which you are in your seventies or eighties and suffering from Dementia. None of your family is able to care for you at home and you have moved into residential care. In the present, you know yourself and your personal history very well. Use your knowledge about yourself as you are now to pick out the information which would help the people who care for you in this imaginary future to maintain your wellbeing as far as possible. What would you need to sustain your well-being?
Questions to Ask Yourself:
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Everyday tastes and habits: How could it help you feel more settled if your caregivers knew about them?
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Your body and your health: What should they know?
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Fears and past events - If they understood these, could they respond more sympathetically?
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Interests and activities - How can they help you sustain your sense of independence?
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Still thinking of you as an older person with dementia: What do you most dread? What is your greatest hope?
Rules A
When working with clients with Dementia, it is easy to have preconceived notions about the type of client they will be. Try to follow the rules listed below. It will improve the standard of care you provide to your clients.
Rules B
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Be “present” in the moment. Be fully attentive. When you do these things, you satisfy the patient need sooner and won’t have to repeat the process as often. It also provides a personal touch to your care.
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Recognize the uniqueness of each person. Know something about each patient that you treat. You need to remember that these are not just clients. They are individuals who have probably lived long and fulfilling lives. Ask them.
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Draw out each person’s remaining abilities. Help to encourage and maximize them. This will be rewarding for both the client and the carer. Try to find something they are good at and encourage it.
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Communicate on a feeling level. Validate their feelings as you would like your own validated. Ask your clients how they are feeling. This will help develop a stronger bond between carer and client.
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Assume words and actions have meaning. Try not to see them only as “problem behaviors”. Try to find hidden meanings behind the client’s actions. This can be difficult, but if you succeed in doing so, you can improve the client’s quality of life.
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Promote independence. Do for them, only what they can’t do for themselves. The decline of people with Dementia is compared to the growth of children, but in reverse. People at both stages need nurturing and encouragement.
Caring for the Carer
As a caregiver you need to be aware of people's attitudes - personal biases, prejudices and stereotypes. Understanding different values and being aware of cultural differences, where it's applicable, will make you a better carer. Where necessary, try to get information about the patient’s culture/preferences. Make sure you adapt the care to fit their preferences and demands. Diversity includes race, ethnicity (culture), nationality, religion (or none) and sexual orientation.
Carer Care A
In addition to the client's rights, the carer has rights too! As a caregiver, take steps to safeguard your own health and well-being. This applies to the staff that provides care as well as to the family members.
It is important that you attend to your own health. Remember to be good to yourself. You’re doing a very hard job and you deserve some quality time, just for you. Do not neglect your own health needs. Care for yourself as passionately as you nurture the people in your life.
Watch out for signs of depression, and don’t delay in getting professional help. As a caregiver, you need to ensure that you have a routine that ensures your physical and mental health - not just for your own good but for the good of those you are working with.
Carer Care B
As a caregiver, you should make the following part of your routine: - Go to your physician for regular health checks.
- Get flu shot; pneumonia vaccines where necessary.
- Take time for regular exercise to maintain your mental and physical health.
- Eat a sensible diet that includes plenty of fruit and vegetables.
- Consider taking classes and engaging in stress-reduction/coping techniques. Some people find yoga, meditation and other relaxation techniques helpful.
- Make sure you get enough rest and sleep.
- Continue to participate in your usual personal leisure/interest activities to ensure you maintain a healthy work-life balance.
Working Effectively with Colleagues
If you are employed as a care worker in a formal setting, it is important to have a strong relationship with your supervisor. You need to see your supervisor as a resource and not simply your boss.
Follow the guidelines below to help create a positive relationship with your supervisor:
- Ask for the information you need.
- Communicate information about changes in a client’s condition.
- Keep your sense of humor.
- Accept constructive criticism.
- Be flexible in accepting assignments.
- Ask questions if you are unsure what’s expected of you.
- Be reluctant or shy in seeking important information.
- Stop offering input, even if you feel you're being ignored.
- React to others’ anger or other stress-causing behaviors.
- Take criticism of your work personally.
- Insist on certain assignments.
- Pretend to understand what you are unsure of.