Welcome to the educational program Continuum of Care: At-Home Care With In-Home Assistance. This program will present some principles and strategies for meeting the varying needs in care during the early and middle stages of Alzheimer’s disease. Because at-home care can sometimes feel like an overwhelming challenge for caregivers and families, this program will also provide information about caregiver assistance and support options.
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We hope that you enjoy this program and find it useful in helping both yourself and those you care for. There are no easy answers when it comes to the care of another, as every situation and person is different. In addition, every caregiver comes with different experiences, skills, and attitudes about caregiving. Our hope is to offer you useful information and guidelines for caring for someone with dementia, but these guidelines will need to be adjusted to suit your own individual needs. Remember that your life experiences, your compassion and your inventiveness will go a long way toward enabling you to provide quality care.
Let’s get started.
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Stages of Alzheimer’s Diseases
Alzheimer’s disease typically progresses over a long period of time, ranging from 7 to 20 years. It is important to remember that every individual is different, and each person can manifest the illness differently at different paces.
Because the illness has a prolonged course, it helps to think of it in terms of stages. The stage classification system provides a guideline for understanding the changes that occur in those with dementia and to better plan for care. A common classification of stages uses the terms: early, middle, late and end stage.
In the early stage of dementia, affected individuals begin to forget appointments, names, and places. They may lose valuable items and may get lost in less familiar places. They often lose social graces and may become obsessed with certain people or things. They may become restless, depressed or apathetic. Sleep disturbances can begin in the early stages and worsen as the disease progresses. Initially, these problems are often attributed to stress, illness or fatigue. After the diagnosis has been made, people often realize that the symptoms of dementia started many months or years before the diagnosis. This early stage of Alzheimer’s typically lasts 2 to 3 yrs.
In the middle stages, individuals will have difficulty with managing money, legal affairs, workplace affairs, and driving. Home maintenance, housekeeping and cooking will become more challenging and perhaps dangerous. They will have difficulty functioning in new environments and can get lost even in familiar places. At this stage, personality changes are obvious, such as hostility, paranoia, swearing, and inappropriate sexual behavior. Difficult behaviors such as wandering and sleep disturbances occur more frequently. Though they may neglect their personal hygiene, when reminded, they are able to manage most of their own bathing, dressing, grooming, and self feeding. This stage typically lasts 3 to 4 years.
In the late stages, individuals will have increasing difficulty with their activities of daily living, including bathing, grooming, and toileting. Mobility will be decline significantly. They will have difficulty understanding their environment, understanding directions and in making themselves understood. Communication difficulties and loss of abilities can lead to frustration, anger, and wandering. Sleep will become more affected by nighttime awakenings, wandering, hallucinations and daytime napping. At this stage of the illness, individuals cannot be left alone and need 24 hour care. Depending on the age and health of the individual, this stage can last anywhere from 4 to 7 years.
The terminal or end stage of Alzheimer’s is the stage when individuals are not be expected to live much longer. No longer ambulatory, they may need complete bed care. They will become incontinent, lose weight and have difficulty chewing and swallowing food. They will not recognize people or objects, though they may have moments of lucidity. Because it is so debilitating, it is rare for this stage to last more than a year. Death may come about from heart failure, pneumonia or other infection, or complete brain shut down of vital functions.
Continuum of Care
The principle of a continuum of care involves planning care for individuals with a range of programs and services to meet their needs as their illness evolves. For example, a person who has had a heart attack will need close medical and nursing care for a period of time, including hospitalization. As treatment is provided and the condition improves, less intense care is needed, so that the person can continue care at home or a rehabilitation care facility.
On the other hand, some conditions and diseases have progressive courses, such as Alzheimer’s disease. So the care needs continue to increase rather than decrease.
The key to an optimal care program is the timing in which planning and decisions are made.
Planning for care should begin soon after diagnosis of the disease, well before placement in a residential care facility is needed.
The goal while advancing the level of care is to transition the person with dementia and the family from lesser to more intense levels of care over the course of the illness. An example of a continuum of care might being in the early stages with visits from a senior companion in the home, followed by a transition to adult day care once a week for a few hours, with a gradual increase in the time spent at adult day care as the person adapts. Placement in a long-term care facility will be a much smoother transition if family members are prepared, and the person is acclimated to settings other than a familiar home.
Case Study 1
Let’s look at a situation with Robert and Mary, who have been married for 35 years. Robert was diagnosed with Alzheimer’s disease, which recently seems to be getting worse. Mary still works running her flower shop during the day and is worried about leaving Robert home alone.What would be the best arrangement for Robert when Mary has to go to work?
- A. Leaving Robert alone and have someone check in on him frequently throughout the day.
- B. Arranging for in-home assistance.
- C. Having Robert come to work with her so that she can watch him.
- D. Placing Robert in an Alzheimer’s care facility.
Case Study 1 Answers:
Choice A: “Leaving Robert alone and having someone check in on him frequently throughout the day” is a good option.
Studies have shown that the longer individuals can be cared for in their own home and by loved family members, the longer they will be able to function at an optimal level.
Depending on the stage of the illness, the symptoms of Alzheimer’s and other dementias can vary. In the early stages people can often be left alone. Over time, they will need more frequent observation. Caregivers can enlist the help of family and friends to “check in” on their loved one. Before leaving someone with dementia at home alone, check with a healthcare provider to discuss whether this is an appropriate option.
Choice B: “Arranging for in-home assistance” is the best choice.
In-home assistance can be helpful if family caregivers are unable to care for someone 24 hours a day, or when trying to delay placement in a long-term care facility. In Mary’s case, having someone come into the home 3 to 5 times per week will ensure that Robert is observed on a regular basis. It also provides Robert with companionship, which is especially important for when he wants to drive somewhere. In-home assistance with chores can also help lessen the burden for the caregiver. Over time, Mary can increase the visits as needed,
Choice C: “Having Robert go to work with Mary so that she can watch him” is a possibility.
Having Robert go to work with Mary is another option, but this option would increase the burden on Mary at work. Furthermore, the abrupt change in the physical and human environments may actually increase Robert’s confusion.
Choice D: “Placing Robert in an Alzheimer’s care facility” is a possibility, but not a very good choice at this stage.
Placing Robert in a dementia care facility at this point is not necessary, as Robert is still capable of performing his daily activities and retains much of his independence in the familiar surroundings of his own home.
Twenty-four hour care may be necessary for many individuals in the later stages of Alzheimer’s disease, however, unless care is managed very carefully, placement in a facility can be traumatic. This traumatic change of environments can accelerate functional decline and even shorten the life of the person. The longer people can remain in the familiar environment of their own home, the better will be their adjustment to subsequent levels of care.
Rather than directly moving individuals from their home into a long-term care facility, it is better to transition them from the home into an adult day care center before moving them into a long-term care facility. This gradual transition will lessen the trauma and risk of hastening functional decline.
Another option is to find Alzheimer’s care facilities that have graded care approaches. Graded care can help ease the transition into the care facility. Given the right circumstances, this may be an appropriate option.
In most states, there are a number of services available to help family members make informed decisions concerning the best placement of their loved one who suffers from dementia and to support their final decision. Remember to involve family members and friends in the decision making process and to call upon them for support.
In Mary’s case, she wants to keep Robert at home as long as possible, so let’s look at some of the strategies that she can use to keep her husband safe, secure and comfortable while at the same time helping him retain his independence.
Home Care Safety
In the early stages of Alzheimer’s disease, people may be able to manage their daily activities at home, but may be in danger from things such as getting lost, confusing cleaning fluids for juice, and leaving things on a hot stove. If they are living alone at this stage, they will require daily observation. It is also critical to safety-proof the home.
Going through the house with an eye for safety hazards on a daily or weekly basis can reduce the risk of accidents. Cleaning materials and other products containing dangerous chemicals should be locked away. Medications for the person should be arranged in a daily medicine caddy or a dispenser prepared by the caregiver or a pharmacist and controlled by the caregiver. Other medications should be removed or locked away.
Proper lighting is important in for preventing falls, fear and confusion. Bright, indirect lighting should be provided in living areas. Glare from windows or shiny surfaces should be eliminated. Lighting at night should be sufficient to assist older eyes in finding their way around the house.
Rooms should be kept organized without clutter. Floors should be kept clean and pathways from room to room, particularly to the bathroom, should be kept clear and well-lit.
Food preparation can pose great hazards. If someone has been used to preparing her or his own meals, the caregiver should work with the person to prepare packaged meals, or meals ahead of time that only need heating in a microwave. You may also need to highlight or label the correct buttons to push on the microwave or stove. Heating water for tea or coffee should be done in the microwave or a kettle with an automatic shut-off.
In the later stages, or for those with little money for in-home care, community services such as Meals on Wheels can be arranged. This service would eliminate some of the meal preparation and can ensure some daily observation of the person’s activities.
In Mary’s situation, the couple has numerous friends and family members who can stop in to check on Robert throughout the day or go with him when he leaves the house. On days when everyone is busy, Mary makes phone calls to Robert throughout the day to check on him and remind him of things. This provides Mary with some assurance that Robert is safe.
It is also helpful to have in place a program, such as the Safe Return Program from the Alzheimer’s Association. in case a loved one does wander away from home. Another option is to have the person wear a locating device, which would allow others to find the person’s location through either GPS, radio frequency, or cellular signals.
Making sure that the person with dementia is comfortable can help reduce the risk of agitation and difficult behaviors. To provide comfort for Robert, Mary helps him select comfortable clothing for the day that is easy to put on and take off and is not constricting. This will also make it easier for Robert to manipulate his clothes when he needs to use the toilet. Mary also takes care of doing the laundry to make sure that he has clean clothes. This also gives her the opportunity to monitor Robert’s ability to maintain his personal hygiene. Mary also monitors the temperature in the house before she leaves and reminds Robert where his sweaters and lap blankets are, as older bodies tend to chill more easily. She also makes sure that he has his medications in case he begins to experience any pain. Mary frequently touches and hugs Robert to convey her support. People show love and respect differently, and depending on the level of the relationship and the comfort level with affection, a hug or a gentle touch can convey caring that words cannot.
Despite the frustrating losses that people with dementia experience, allowing them some independence and autonomy will help them to retain their dignity. But allowing independence can be a hard guideline to follow while trying to ensure safety and security. Caregivers should try to support retained capacities as long as possible, but at the same time, consider the person’s safety. The ideal would be to allow choices in a framework that is safe.
Caregiver Support (Part 1)
Caregivers cannot manage the challenges of caring for someone with dementia all by themselves. They need to keep in mind that Alzheimer’s disease has a long course and requires an increasing amount of care. Caregivers need to pace themselves, accept and ask for help, and plan for the long term needs for themselves as well as of their loved one.
In the early 1980’s, the Alzheimer’s Association initiated some of the first caregiver support groups. Support groups provide a forum for support and the exchange of ideas about caring for someone with Alzheimer’s or a related dementia. Caregivers can find comfort in sharing experiences with others who have similar difficult and painful experiences.
The number of support groups has grown considerably, and most caregivers can find groups in their communities within a reasonable distance. You can contact the Alzheimer’s Association helpline 24 hours a day, 7 days a week. In some cities, there are support groups for different stages of the illness. There may also be meetings where both the caregiver and the family member with dementia can attend together.
There are also many national and state-sponsored organizations that provide support to caregivers. The National Family Caregivers Association educates, supports, empowers and speaks up for family caregivers. Lotsa Helping Hands provides an interactive calendar and other functions that will enable you to organize your friends, relatives and neighbors into an effective support group. The Administration on Aging provides a variety of programs and services related to aging, including meal services, transportation services, adult day care, legal assistance, and health promotion programs. The National Council on Aging is an advocacy organization that helps seniors live independently, learn about available services and benefits, and improve their health.
Caregiver Support (Part 2)
Senior Companions is a program under the National Senior Service Corps. This is a network of federally supported programs that provide opportunities for seniors to volunteer their time as foster grandparents, senior companions, and retired senior volunteers. Interested seniors are recruited and trained to provide visitation in homes for home-bound elders. Training includes understanding diseases such as Alzheimer’s, Parkinson’s and depression. The volunteers also learn techniques to engage individuals from reading, to playing games such as checkers or cards. The object of the visitation is to provide mental and social stimulation and loving attention.
Senior Companions may also escort care recipients to medical appointments, recreational, or social events. They may provide assistance with grooming, eating and exercising, and may help with light housekeeping. Senior Companions volunteers receive a minimal stipend from the program, not from the family served. The program is available for seniors 60 years of age or older with limited income.
There may be other volunteer services in your area that provide support and assistance to caregivers. Inquire at your community center and local volunteer programs.
Another source of support may be religious organizations. Some churches employ a parish nurse and have outreach programs for their members and non-members in need. For information about such programs, you should contact the religious organizations in your area.
Caregiver Support (Part 3)
Respite programs are available in most communities.
Respite care is the provision of short-term relief to those who are caring for family members. It essentially provides a short break from caregiving.
There are five models for providing respite care: in-home respite, specialized facility, sitter-companion services, emergency respite, and adult day care.
In-home respite care is popular, because the temporary caregiver comes to the home and gets to know the person, the family, and the person’s regular routines. This form of respite care can be provided by friends, relatives and paid professionals. Because the visiting caregiver initially will not know the person or routines very well, it is helpful to provide “caregiver checklist” to the new caregiver with important information about caregiving and handling emergencies. An example of a caregiver checklist can be found at the provided website.
Specialized facilities that offer respite care will take the care recipient for a few days to a few weeks. These overnight respite facilities are a nice option if the primary caregiver needs to be away for a period of time. Depending on the state, Medicaid or Medicare may be used to help cover some of the costs of respite care in the home and at specialized facilities.
Sitter-companion services are sometimes provided by local civic groups, the religious communities, and other community organizations in addition to the National Senior Service Corps already discussed. Make sure the sitter-companion is trained in what to do during emergencies if the regular caregiver is away from the home.
With emergency respite care, caregivers set up an agreement with a provider or facility to care for their person in case of an emergency. Many homecare agencies, adult day care, health centers, and residential care facilities provide emergency respite care.
Adult day care provides respite care at a center during the day. They can provide health services, therapeutic services, nutritious meals, and social activities for people with dementia, chronic illness, or disabilities. Generally, the programs are available several hours a
Another useful source of caregiving support is through nutrition programs. The Elderly Nutrition Program is a federal and state funded nutrition program which allows local elderly agencies to provide nutritious meals to seniors age 60 or older at congregate meal sites and through home-delivered meals, and to handicapped or disabled people under age 60 who live in housing facilities occupied primarily by seniors where congregate meals are served.
Meals on Wheels delivers hot meals to home-bound individuals on a daily basis. Volunteers are trained in the visitation aspects of the service as well as the nutritional components. Information on obtaining this service can be found in your local phone directory or at the Meals on Wheels Association of America’s website.
Congregate meals are offered in local senior centers and provide opportunities for socialization as well as nutrition. Nutritious meals are prepared in a central location and delivered to the senior centers or other congregate site where final preparations are made. The cost for the meal is minimal. Some free meals are available depending on the individual’s situation. For those who are not able to drive or walk to the senior center, transportation can also be arranged. Contact your local senior centers to find out if they offer congregate meal service.
Here are a list of additional resources for caregivers.
- Alzheimer’s Research and Resource Foundation (ARARF)
- Alzheimer’s Disease Education and Referral Center (ADEAR)
- Alzheimer’s Disease International (AI)
- National Adult Day Services Association (NADSA)
- Assisted Living Federation of America (ALFA)
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Written by: Catherine M. Harris, PhD, RNCS (University of New Mexico College of Nursing)
Edited by: Mindy J. Kim-Miller, MD, PhD (University of Chicago School of Medicine)
- Assisted Living Federation of America. (2008). Federal statutes that impact assisted living. http://www.alfa.org/i4a/pages/Index/
- Butcher HK, Holkup PA, Maas M, (2001). Thematic analysis of the experience of making a decision o place a family member with Alzheimer’s disease. Res Nurs Health 24(6): 470-80.
- Gaugler J, Leach C, Clay T, Newcomer R. (2004). Predictors of nursing home placement in African Americans with dementia. Journal American Geriatrics Society. 52:445-452.
- KaganJ. Respite Care. (2006). Wikipedia. Retrieved on March 17, 2009, from http://en.wikipedia.org/wiki/Respite_careARCH National Respite Coalition.
- McClendon MJ, Smyth KA, Neundorfer MM, (2006). Long-term-care placement and survival of persons with Alzheimer’s disease. Journals of Gerontology Series B. 61B(4) p220-7.
- Wang S, Davies E. (2007). [Family caregivers’ adjustment to nursing home placement of older relatives].Journal of Nursing (China). Jun; 54(3): 82-86.
- Schur D, Whitlach CJ. (2003). Circumstances leading to placement: A difficult caregiving decision. Lippencott’s Case Management 8 (5): 187-97.
- Whirrett T. Adult Day Care: One Form of Respite for Older Adults. (2002). ARCH Factsheet Number 54. Retrieved on March 17, 2009, from http://www.archrespite.org/archfs54.pdf.