Short-term (respite) and permanent housing options may include supportive living, group homes, retirement residences or long-term care homes. Your local Alzheimer Society will have information on the services available in your area. In making your decision, try to remain flexible and keep in mind the needs of the person you’re caring for. When looking at caregiving options, remember that there are no right or wrong choices. For some, the decision will be to continue providing care at home or in the community. For others, the choice will be made to arrange for care provided in a long-term care facility.
Learning more about the disease and being able to talk about your feelings can often help to clarify your decision. The person with dementia will eventually require full-time caregiving and you can’t do it alone. Your friends, family or an Alzheimer support group of caregivers can be especially important during this time.
If you decide to continue caregiving at home, it will be important to know about the support services available. In-home respite services, a home-care worker or visiting nurse can provide you with relief from caregiving tasks. At the same time, you might wish to consider enlisting additional support for day-to-day chores such as housekeeping, laundry and home maintenance.
The Alzheimer Society can inform you of the available services in your area. If you decide to arrange for care in a long-term care facility, there are a number of things you can do to make this decision easier — both for you and for the person with the disease.
Need More Information?
Contact your local Alzheimer Society.
- All about me booklet, A fillable PDF to help caregivers get to know you better
- Guidelines for Care, Alzheimer Society of Canada.
- The Alzheimer Journey: At the Crossroads, Alzheimer Society of Canada.
- “Are you caring for someone with Alzheimer’s Disease? Remember to take care of yourself too!”, Alzheimer Society of Canada.
- Pain and cognitive impairment: reading the cues (video), Canadian Virtual Hospice
- An action plan to address abuse and neglect in long-term care homes,Long-Term Care Task Force on Resident Care and Safety
Making the decision to move
Making the decision to move the person you have been caring for to a long-term care home is one of the most difficult decisions you will have to make. However, it may also be necessary, for both your well-being and that of the person you are caring for. You may want to talk over your decision with your family physician or a social worker. Being prepared can help make this decision less stressful. Often, when a vacancy becomes available in a long-term care home, you will need to make a quick decision about accepting it. Familiarize yourself with the long-term care homes in your area and ask questions about the services, policies and costs of the home beforehand. This will help you make the best decision. A number of resource people can help you in your search for an appropriate long-term care home. These may include your local Alzheimer Society, support groups, friends or family, doctors, faith leaders, social workers, social service agencies or local organizations for seniors.
Assessing a long-term care facility
Contact your local Alzheimer Society for information about the long-term care application process in your area.
Some communities will have several homes to choose from. Once you have compiled a list of long-term care homes in your area, call and ask some general questions such as: Is there a waiting list?
- What is the cost for living at the home, including the cost of extra care as the disease progresses?
- Will the person with dementia be able to live there throughout the course of the disease?
Narrow your list based on the answers you receive. When you have shortened the list, you will want to visit the home yourself. If appropriate, you may wish to consider having the person you care for visit the home, too. You will have your own set of priorities to consider, and some of your expectations may be more important than others. Keep these in mind as you begin your search. The following are general questions that may be helpful in assessing the quality of each home you visit. Pay attention to your “gut” feelings as you begin to tour; they can help you decide whether a home is appropriate for the needs of the person you are caring for. You may find it useful to bring along a friend or family member for input and support as you visit each home. Talking to the residents and their family members can also be helpful. Questions to consider when visiting long-term care homes
|Area of concern||Questions to ask|
|Medical care/ continuum of care||
Even after an extensive search, be aware that you may not find everything you want in a single home. Try to remain flexible. Ask yourself how you feel about working together with staff to meet the needs of the person with dementia. Moving the person to a long-term care home does not mean that your role as a caregiver is any less important than before. You may find that you have a different focus, such as staying connected to the person and advocating for quality dementia care. You can promote quality care for the person with the disease by sharing the Alzheimer Society’s Guidelines for Care booklet with staff. A copy is available from your local Alzheimer Society. Your local society can also provide staff training and education. If you make the decision to arrange for care in a long-term care home, see the other pages in this section for advice on preparing for the move and helping staff get to know the person with Alzheimer’s disease.
Moving to long-term care
Preparing for the move
The move from home or the community to a long-term care home can be made easier for both the caregiver and the person with the disease by preparing ahead of time. If appropriate, have the person visit the long-term care home in advance so that he can become familiar with the new environment. Since many facilities’ social activities are open to the public, you may find it helpful to attend a few functions prior to the move. On moving day, take any items that might make the person with dementia feel more comfortable. Photographs, a radio, or a favourite blanket can help to personalize a room. Seeing familiar objects may also help the person adjust to the new environment. Take care of yourself on moving day. If you can, bring a friend along or plan to have someone at home when you return so you are not alone.
What you might be feeling
As a caregiver, you will experience a broad range of emotions once the person you have cared for has moved to a long-term care home. You may feel guilty. You may feel relieved that the responsibility of providing care is no longer solely on your shoulders. You may even experience second thoughts about your decision. These are all normal reactions.
Adjusting to the new situation
It will take time for both of you to adjust to your new situation. Keep in mind that there is no correct number of times to visit the person during this period. For some people, the strain of caregiving has been such that they need a “rest” during the first few weeks after moving. Others will want to go as often as possible during the first few weeks. Whatever you decide during this period is the right decision for you. Go as often as you want and stay for as long as you feel comfortable. The important thing is to make each visit — no matter the length or the frequency — as full and rewarding as possible for both of you. The person with dementia will also need some time to adjust to the new environment. Try to be patient as she settles in. For some, this may take weeks or months; for others, it may be less. Communicate closely with the staff during this adjustment period.
Changes in the person with dementia
Sometimes, the person with dementia adjusts quite well to the new surroundings. This may leave you with mixed emotions — while you feel happy that he is doing so well, you may also feel slightly rejected because he seems more content in the facility than at home. These feelings are perfectly natural. You have not lost your role as caregiver. You are now sharing the responsibility of care with others. There are bound to be some fundamental differences in the caregiving routine provided by a facility and that which you had provided at home. Remember, you were providing ongoing care at home for 24 hours a day, seven days a week, but staff are not responsible for carrying the caregiving responsibilities alone. Staff members work in shifts, sharing the responsibility of caring for a number of people with other health-care professionals. A benefit of having outside care is that you can focus your time and energy, to provide the person with a sense of belonging and love that no one else can give. Remember that dementia will continue to progress regardless of where the person lives. Sometimes, caregivers expect that the person with dementia will improve once she is under the care of staff. When this does not happen, there is disappointment. You may find that you need to continue to learn more about the disease process and care techniques. Your local Alzheimer Society can provide information and resources to help you.