Facts about Alzheimer’s Disease
- An estimated 4.5 million Americans have Alzheimer’s disease. A national survey in 1993 indicates that approximately 19 million Americans say they have a family member with Alzheimer’s and 37 million know someone with the disease (Lund, 2001).
- Fourteen million Americans will have Alzheimer’s by the middle of this century unless a cure or prevention is found.
- It is estimated that more than 22 million individuals worldwide will have Alzheimer’s by 2025.
- One in 10 persons over 65 and nearly half of those over 85 have Alzheimer’s disease. A small percentage of people in their thirties, forties, and fifties have early onset Alzheimer’s.
- A person with Alzheimer’s lives an average of 8 years after diagnosis and as many as 20. At any given time, 7 out of 10 persons with this disease live at home.
These facts suggest the impact Alzheimer’s disease can have on family members or other caregivers. Because of the substantial responsibility of caring for a person with Alzheimer’s disease, caregivers often seek respite.
Respite Models
What are the Respite Options for the Caregiver and the 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
- Counseling
- Meals
- Transportation
- Recreation
- Medical help
- Mental stimulation
- Options such as bathing
- Exercise
- Therapies such as physical and speech
- Emotional support for both caregiver and participant
- Education for both caregiver and participant
Activities for Persons with Alzheimer’s or a Related Dementia
Activity programming is fundamental in Alzheimer/dementia care because it maximizes independence for the participant while focusing on his or her strengths and abilities. A care/service plan for a person with Alzheimer’s disease or related dementia takes into consideration the individualized needs of the person.
Whether provided by family, friends, home care agencies, respite homes, or adult day centers, activities for someone with Alzheimer’s disease must be based on the person’s capabilities, physical health, behavioral status, and personal preferences. First and foremost, the participant must always be recognized with respect and dignity. Secondly, if an activity is to be meaningful, it must have a purpose, be voluntary, feel good to the participant, and offer the person with the disease a reasonable chance of success.
Activities should be planned to address the needs, history, strengths, and challenges of each individual. They should reflect as much as possible the person’s preferred lifestyle while providing a sense of usefulness, pleasure, success, and as normal a level of functioning as possible.
The physical, social, and cultural environment should be designed to encourage and support independence while promoting safety. Finding appropriate staff to provide respite is also essential. Staff need to be trained in dementia-related skills before working with those with Alzheimer’s disease or a related dementia.
For a person with dementia, an “activity” can take many forms. It may be as simple as a personal encounter such as eye contact, an exchange of greetings, shared laughter, or a hug. Group activities are also extremely important, because socialization with others in a recreational activity such as exercise, a mental stimulation game, or music helps minimize isolation.
Whatever the activity, it should be
- Environmentally conducive. Offering the participant a chair in front of a window that looks onto a bird feeder may encourage bird watching, while offering a chair at a table with others and a snack may encourage social interaction.
- Repetitive. Persons with Alzheimer’s disease may enjoy helping with simple daily housekeeping routines similar to those they did in the past. Examples include folding laundry, setting or clearing the table, dusting, raking, and sweeping. Repetitive tasks can make the person feel useful and productive.
- Routine. Consistency in routine is calming to the person with Alzheimer’s disease. During the early stages of Alzheimer’s disease, a daily routine that incorporates personal care activities can successfully provide structure to the person’s day. Planned, scheduled activities that take into account the person’s current abilities and are done on a regular basis can help the participant feel successful and happy.
- Spontaneous. For someone who is anxious or restless, a spur-of-the-moment invitation to have a cup of tea or take a walk, for example, may distract him or her and diffuse the situation.
- One-on-one. Person-to-person interactions are useful for participants whose attention is difficult to maintain, and such interactions provide private time in which to build relationships
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.
Summary
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.
Reference
Lund, D. A., & Wright, S. D. (2001). Respite Services: Enhancing the Quality of Daily Life for Caregivers and Persons with Dementia (2nd ed.). Salt Lake City: University of Utah College of Nursing and Alzheimer’s Association of Utah.
Resources
Each state has different guidelines/regulations/resources for respite care. To locate respite providers, programs, and adult day care centers in your area, contact your State Department on Aging, Regional Area Agency on Aging, County Council on Aging, or local senior center.
The telephone number for your State Department of Aging can be found in the government section of the local phone book. The local chapter of the Alzheimer’s Association and local adult day care centers are listed in the business/organization section of the phone book. Listed in the Yellow Pages are nursing homes and assisted living facilities; other helpful organizations and providers may be listed under senior services or sitter services. Respite services may also be available through the local United Way, religious or faith-based organizations, or mental health offices, all of which may be listed in your local phone book.
The Eldercare Locator is a service developed through the U.S. Administration on Aging in Washington, D.C. Call 1-800-677-1116 for information in your area.
If you have a computer and access to the Internet, the best way to find respite organizations in your area is through the following important Web sites:
- www.respitelocator.org, site of the ARCH Respite Locator Service. Click on the desired state to find a list of respite programs in your locale.
- www.alz.org, site of the national Alzheimer’s Association. Click on the desired state to find the local chapter. Many of the local chapters have limited funding for respite services and provide support groups for caregivers of persons with Alzheimer’s disease and related dementia.
- www.ncoa.org/nadsa, site of the National Adult Day Services Association.
- www.nasua.org, the National Association of State Units (Departments) on Aging.
- www.nNa.org, the National Association of Area Agencies on Aging. Click on the desired state to find the regional Area Agency on Aging (AAA) near you. Recently, all Area Agencies on Aging received funding through the National Family Caregivers Support Act to develop local respite and support programs for caregivers of the elderly.
- Finally, on the Internet a key word search under “respite care” or “respite services” may yield local programs that have Web sites.
ARCH Factsheet 55, April, 2002
National Respite Locator Service
ARCH Networking Conference 2002
Joyce Lewis
