Dementia in Amyotrophic Lateral Sclerosis (ALS)
Next Steps for Demential and ALS
People with fronto-temporal dementia-like symptoms require regularly scheduled follow-up visits with the medical professional coordinating his or her care. These visits will give the coordinator a chance to check progress and monitor behavioral changes. The coordinator can make recommendations for changes in treatment if any are necessary.
Prevention of Dementia and ALS
There is no known way to prevent ALS or the dementia that may be seen with it. This is an area of intense research in motor neuron diseases.
Outlook for Dementia and ALS
No cure is available for fronto-temporal lobe dementia or ALS, the underlying motor neuron disease. Motor neuron diseases are terminal illnesses, meaning that they cause death. Most people with motor neuron disease die within five years of the first symptoms. The actual cause of death is usually respiratory failure or infections related to respiratory disability.
Motor neuron disease linked to dementia seems to be even more aggressive. People with this form of the disease usually die within three years of the first symptoms.
If you have motor neuron disease, you should take the opportunity to express your wishes about medical care, estate planning, and personal issues while you are still able.
- Preferences concerning medical care at the end of life should be clarified early and documented in your medical chart. Your spouse and other close family members should understand your wishes. Early clarification of these wishes prevents conflicts later when you are not able to speak for yourself.
- You should consult a lawyer as early as possible. Personal affairs should be settled. Later in the disease, you may not be able to sign papers or even communicate your wishes.
Support Groups and Counseling
Living with motor neuron disease presents many new challenges, both for the affected person and for family and friends.
- You will naturally have many worries about the disabilities that come with the disease. You worry about how your family will cope with the demands of your care. You wonder how they will manage when you are no longer able to contribute. You may feel anxious about death.
- Your loved ones also feel anxious about your death and how much they will miss you. They wonder how they will care for you through your illness. Money is almost always a concern.
- Many people in this situation feel anxious and depressed, at least sometimes. Some people feel angry and resentful; others feel helpless and defeated.