Huntington's
disease (HD)  Print
Friendly Version
Strategies for
Coping Safety
and Environment Due to the debilitating nature of the disease, caring for a patient with HD can be physically and emotionally exhausting. As the disease progresses and patients become unable to perform activities of daily living ( ADLs), they require increased amounts of care. A person with HD eventually becomes dependent for all basic needs (eating, toileting, and bathing). Most likely, adaptive equipment will be necessary to help care for your loved one. Your local physician can help you by ordering a home safety evaluation by an occupational therapist (OT). Maintaining balance is a common problem and can result in increased falls. An evaluation by a physical therapist (PT) can sometimes be helpful as well, particularly in the early stages of the disease when patients have more mobility of limbs. The OT and PT will determine what adaptive equipment may be helpful. For example, a grab bar in the shower may facilitate safe bathing. Weight loss, not due to decreased caloric intake, is a common feature of patients with HD. In later stages of the disease, patients are often bed-bound and have significant swallowing problems. Special devices to assist in ADLs, special diet to aid in swallowing, and increasing calories to counteract weight loss may eventually require consideration. In some cases, the patient may not recognize that their behaviors or personality traits are changing. It is important to remember that the patient may not have control over some behaviors and not blame the patient. Behavior modification may be helpful for minimizing unacceptable or dangerous behaviors Behavior modification consists of rewarding appropriate or positive behaviors and ignoring inappropriate behaviors (within the bounds of safety). Reality orientation, with repeated reinforcement of environmental and other cues, may help reduce disorientation. Planning for the Future Legal advice may be prudent early in the disease process to help form an advanced directive. A social worker can help you with this. An advanced directive is a legal document that outlines what type of care the affected individual would like at the end of life. As early as possible in the course of the illness, it is a good idea to think about who will be making decisions for the person with HD when they are no longer able to do so for themselves. One should consider having a Durable Power of Attorney for Health Care and/or Finances appointed while a the person is still able to make such decisions; a Durable Power of Attorney can legally make medical or financial decisions for the patient when the patient is not capable of doing so for themselves. It is important to determine what type of medical and or surgical intervention they would like in case of emergency. Talking openly amongst the family may be difficult, but it is important to ask the tough questions, especially in order to learn about and implement the patient’s choices. For the family taking care of a person with HD, there are many challenges and many questions. Below is a list of organizations that may be able to help and websites that provide additional information on HD.
If you live in the San Francisco Bay Area, we offer an HD Support Group for family members or caregivers. Also, please see our Resources for Huntington's Disease section.
|
