By Sharon A. O'Brien
SC; RN, PG; BSW, RSW; CG
Executive Vice-President of Policy & Education
The tests have been done. The tentative diagnosis has been made. Your loved one has Alzheimer Disease. You are devastated. You now must face the reality of your fears.
Each day will bring new realities and new challenges. You accept the challenge. This is the person you have known and loved for 25-40-55 years. The love is deep and the commitment goes well beyond any difficulties encountered over the years.
There are six principles of care that need to be considered as you accept the challenge to provide appropriate care.
1. As difficult as it may be sometimes, remember how the person behaves is a direct reflection of the disease. The person has no control over behaviour. It is not a deliberate attempt to shock you nor is it “stubbornness” or “childishness”.
2. The person with Alzheimer Disease deserves the same dignity and respect as before the disease struck. As the caregiver, you must protect the person from disrespect. Remind family, visitors, and professionals of the life journey and the accomplishments of your loved one.
3. Stress the positive. Build on abilities. The person with Alzheimer Disease needs to be encouraged to continue with favourite activities as long as possible. Included may be playing cards, golfing, curling, and family gatherings.
4. The family is an integral part of the Circle of Care. Encourage family members to learn all they can about the disease. The Internet, the Alzheimer Society, and local education programs are available.
5. It is important to build partnerships with other members of the care team; e.g., caregivers, the family physician, the pharmacist, the spiritual adviser, friends offering respite care, etc.
6. The sixth principle should probably be the first principle. Look after yourself. Schedule breaks. Accept support. You are one member of the care team. Allow others to help you provide appropriate care. This experience will change you. You have the opportunity to make a huge difference in the life of a vulnerable loved one.