e-mail page text size:

The reality of Alzheimer's disease is such that, as the disease progresses, full-time care will be needed. The person will require round-the-clock, seven -days-a-week assistance with everyday activities, including bathing, dressing, eating and using the bathroom. Meeting these needs on a regular basis can become demanding. It is important to assess whether or not you are able to continue caregiving by considering your health, the needs of the person with Alzheimer's disease and the family's ability to provide the care that is required.

The following checklist may help you identify how stress is affecting your life. Place a checkmark to indicate how often you display responses to stress.

Caregiver Stress Checklist (Excerpt from The Alzheimer Journey: At the Crossroads)	Never	Sometimes	Often
Loss of Sleep Are you experiencing difficulty getting to sleep? Do you wake up in the middle of the night? Do you have stressful dreams?
Personal Health Have you gained/lost weight recently? Do you get ill more often than you used to? Have you developed chronic health problems (e.g., backache, headaches, high blood pressure)?
Emotional Health Do minor upsets make you cry? Are small incidents making you irritated or angry? Are you having difficulty controlling your temper? Do you feel pressure to hold things together? Are you feeling hopeless about our current situation?
Loss of Interests Have you given up hobbies or interests that you once enjoyed? Are you spending less time with others?

If your responses are increasing in intensity or occurring more often, you will need to seek help caring for yourself. Even with the help of support services, meeting the needs of the person with Alzheimer's disease can be overwhelming. At some point, you may need to consider alternate caregiving options.
When looking at these options, it is important to remember that there are no right or wrong choices to be made. Each caregiver will make a decision based on what is best for everyone concerned -- at that time. For some, the decision will be to continue caregiving at home. For others, the choice will be made to transfer care to a long-term care facility.

Being able to talk about your feelings can often help to clarify your decision. Your support network of friends, family or Alzheimer support group can be especially important during this time.
If you decide to continue caregiving at home, you will need to have the necessary support. In-home respite services, a home care worker or visiting nurse can provide you with relief from caregiving tasks. At the same time, you will want 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 support services in your area.

If you decide to transfer the person's care to a long-term care facility, there are a number of things you can do to make this decision easier -- for both you and the person with the disease.

Making the decision

Making the decision to move the person you have been caring for to a facility is one of the most difficult decisions you will have to make. However, it may also be one that is necessary, both for your well-being and that of the person you are caring for.

Being prepared can help make this decision less stressful. Often, when space becomes available in a long-term care facility, you will be required to make a decision quickly. It is important, therefore, to familiarize yourself with the long-term care facilities in your area and ask questions about the services, policies and costs of the facility beforehand. This will help you to make the best decision in a pressured situation.
A number of resource people can help you in your search for an appropriate long-term care facility. These may include the local Alzheimer Society, support groups, friends or family, doctors, clergy, 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 placement process in your area.
Some areas will have a number of long-term care facilities to choose from. Once you have compiled a list of long-term care facilities in your area, call and ask some general questions over the phone, such as: Is there a waiting list? What is the cost for living at the facility?

You should be able to narrow your list based on the answers you receive. When you have shortened the list, you will want to visit the facilities yourself. 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 of the facilities you visit. Don't forget to pay attention to your "gut" feelings as you begin to tour; they can be very helpful in determining if a facility is appropriate for the needs of the person you are caring for. You may also find it useful to bring along a friend or family member for input and support as you visit each facility.

Area of Concern	Questions to Ask
Location	- Is the facility conveniently located? - Will you be able to visit easily? - Does public transportation run nearby?
Appearance	- Are the kitchen, day rooms and bedrooms clean and tidy, and free from unpleasant odours?
Menus	- Is the menu varied and nutritious? - Can the facility accommodate special dietary needs? Is food available throughout the day? - Is snacking possible? Are mealtimes flexible?
Bathrooms	- Are they private? - Are they clean? - Are they easy to find? - Are there grab bars and other safe devices present?
Alzheimer-friendly	- Are staff specially trained to care for someone with Alzheimer's disease? - Is the facility "home-like"? - Is there a separate unit for Alzheimer residents? - Can the residents wander safely indoors and outside?
Resident-to-staff ratio	- What is the resident to staff ratio? - What proportion of residents have Alzheimer Disease? - Do staff provide enough care throughout the disease process?
Interaction	- Do all staff interact with residents on a regular basis and in a friendly and personable manner?
Activities	- Is there a variety of meaningful activities for groups and individuals? - Are there therapeutic activities, such as music, pets, and horticulture? - Are there opportunities to socialize? Is there flexibility in the routines?
Visiting	- When can you visit? Can you have privacy with the resident? - Can you take the resident for outings?
Behaviour management	- How are behaviours handled? Are restraints used? (These may be physical restraints, like a geri-chair; chemical restraints, like sedatives, or restraints to the environment, like a locked door.) - What proportion of residents appear to be "medicated" or have a physical restraint?
Safety	- Are there smoke detectors? Are there slip-proof mats in the baths, grab rails, etc.?
Medical care	- Can you continue to use your own doctor? - Is there a doctor on call? How often does the doctor visit? - Can you meet the doctor? How are medical emergencies handled?
Care philosophy	- Does the facility focus on individual resident needs? - Can it accommodate flexibility in routines? ("My mother has never been a morning person.") - Are there regular care planning meetings that include family members?
Individualized care	- Is consideration given to individual cultural, religious or spiritual needs? - Are other languages spoken?

Even after an extensive search, be aware that you may not find everything you want in a single facility. You may also find that, in some communities, the choice of facilities will be limited. In making your decision, try to remain flexible and keep in mind the needs of the person with Alzheimer Disease. Ask yourself whether you will be able to work with staff to meet those needs in the future.

If you make the decision for the person to move to a long-term care facility, see the information sheet Adjusting to Long-term Care for advice on preparing for the move and helping staff get to know the person with Alzheimer's disease.

Resources:
1. Guidelines for Care, Alzheimer Society of Canada.

2. The Alzheimer Journey: At the Crossroads, Alzheimer Society of Canada.

3. Are you providing Alzheimer Care? 10 Signs of Caregiver Stress, Alzheimer Society of Canada.

4. Reducing Caregiver Stress: Finding Ways to Feel Better, Alzheimer Society of Canada.

[To read and/or print these brochures/flyers, you will need the free Adobe Acrobat Reader]