A person with Alzheimer's lives an average of eight years after diagnosis and can survive for as many as 20 years post-diagnosis. At any given time, seven out of ten persons with this disease live at home. Because of the substantial responsibility of caring for a person with Alzheimer's disease, caregivers often seek respite.
What are the Respite Options for the Caregiver and Care Recipient?
In-home services offer a wide range of options, including companion services, personal care, household assistance, and skilled nursing care to meet specific needs of those involved. Contact your local Area Agency on Aging, county council on aging, or local senior centers for more information about in-home services. All states also have a local chapter of the Alzheimer's Association that can assist with valuable information about respite options and support for caregivers. In addition, many home health agencies in your State provide some form of assistance to persons with Alzheimer's under Federal Medicare or State Medicaid rules and regulations.
Respite care facilities provide overnight, weekend, and longer stays for someone with Alzheimer's or a related dementia so a caregiver can have longer periods of time off. These facilities provide meals, help with activities of daily living, therapeutic activities to fit the needs of residents, and a safe, supervised environment. Examples of such facilities include nursing homes, residential care facilities, and assisted living facilities.
Emergency respite is often offered in many nursing homes, residential care facilities, and assisted living facilities. Emergency respite care may be needed when a caregiver becomes ill or must go out of town unexpectedly, or if the care recipient is at risk of abuse or neglect. It is best for the caregiver to be prepared for this type of respite by finding the best facility and registering there ahead of time. Each community is unique in its response to crisis respite and the elderly. Some communities have emergency guest houses for such situations, while in other communities, State Medicaid dollars will pay for emergency respite in nursing homes or assisted living facilities.
Adult day services provide a planned program that includes a variety of health, social, and support services in a protective setting during daytime hours. This is referred to as a "community based service" and is designed to meet the individual needs of functionally and/or cognitively impaired adults. Adult day services programming may provide:
- Social activities
- Medical help
- Mental stimulation
- Options such as bathing
- Therapies such as physical and speech
- Emotional support for both caregiver and participant
- Education for both caregiver and participant
Suggestions for Caregivers
Caregivers need to consider respite services much earlier than they think they will need them. Respite is most helpful to caregivers if they use it before they become exhausted, isolated, and overwhelmed by their responsibilities. Respite services can be beneficial to both the caregiver and the care receiver.
Caregivers need to have sufficient and regular amounts of respite time. Temporary and short-term respite alone does not provide the help most caregivers need. Caregivers need to give careful thought to how they want to spend their respite time. Respite needs to be meaningful and purposeful for caregivers to fulfill their needs and plans.
Respite is most effective when combined with other services and assistance. Respite should not stand alone as a single strategy. Caregivers need education, emotional and social support, and a sense of belonging with others.
Respite needs to be part of a more complete package of help.
Respite care can give the caregiver the time and assistance needed to meet personal needs as well as other responsibilities. Respite benefits both the caregiver and the care receiver. Whether a caregiver receives respite in the home or outside the home, the individuality of the person being cared for needs to be taken into consideration to make the respite experience successful for both the respite provider and the person with Alzheimer's.
The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.