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Guidelines for Alzheimer's Disease & Dementia Caregivers

Caring for someone with the dementia will at times be incredibly draining. The day-to-day attention you need to give your care recipient will call on all your resources  -- mental, physical, emotional and intellectual. Don't let your own needs slide to the bottom of the priority list. Your role of caregiver is an important one, but you must also remember to look after yourself. Watch yourself for signs of burnout (Source: The Alzheimer's Society of Canada):

  • Emotional outbursts
  • Depression
  • Social withdrawal
  • Lack of sleep
  • Exhaustion
  • Anger at your care recipient
  • Anxiety about the future
  • Inability to concentrate
  • Denial about your care recipient's condition
  • Increase in general health problems.

You cannot act in your care recipient's best interests if you are chronically exhausted or depressed. Here are "ALZwell’s 21 Guidelines to Caregiving" to help you achieve a balanced life and survive as a confident caregiver:

  1. Seek Information
  2. Be Open to New Technologies
  3. Set Realistic Goals
  4. Use Community Resources
  5. Trust Your Instincts
  6. Stand Up For Your Caregiver Rights
  7. Love Yourself
  8. Maintain Your Health
  9. Allow Time for Yourself
  10. Keep Your Life in Balance
  11. Take a Break
  12. Communicate
  13. Accept Help
  14. Deflect Criticism of Your Efforts
  15. Understand You May Experience Guilt
  16. Watch Out for Signs of Depression
  17. Know You Are Not Alone
  18. Avoid Self-destructive Behavior
  19. Share Your Problems
  20. Join a Support Group
  21. Laugh

ALZwell’s 21 Guidelines to Caregiving

1. Seek Information

Check libraries, bookstores, and the Internet for general advice on caregiving and dementia. Hospitals, community colleges and service organizations may offer courses and other resources. Educate yourself about your care recipient's condition and continue to stay informed. Information is empowering. The effects of dementia can be difficult to cope with and can cause tremendous strain on you. The more you understand, the easier it will be to deal with day-to-day problems.

A medical professional can certainly provide you with information. Don't heitate to ask your doctor or other professional health care providers if you have questions; don't be afraid to admit you don't understand what they are telling you. Write down any questions you have before you meet with your medical professionals. Use a tape recorder (with permission) or a pen and paper to write down what they tell you during the sessions so you can review the information later.

Try to read at least one new resource (journal, book, article, website) on dementia and/or caregiving each week.

2. Be Open to New Technologies
There is a difference between caring and providing care. Be open to new technologies and ideas that promote your care recipient's independence.

3. Set Realistic Goals

You cannot do everything, nor should you ask it of yourself. Recognize what you can and can't do and set priorities. Ask others - friends, family and neighbors - for help when you need it. They can give you a break by helping with chores like house cleaning, running errands or meal preparation. They may even be able to offer short periods of respite care. Try not to expect too much from your care recipient. People with dementia have good days and bad days. Remember to be patient and take things day by day.

4. Use Community Resources

Don't forget to investigate community resources that may be helpful. Accept opportunities for respite care. Perhaps you can find a homemaker or an aide to help you out.

5. Trust your Instincts

They will typically lead you in the right direction.

6. Stand Up for Your Caregiver Rights

Stand up for your rights as a caregiver and a citizen.

7. Love Yourself

Remember to be good to, and look after yourself. Thinking positive thoughts about yourself can be hard when you're caregiving. Family members may not think you're doing a good job and even your care recipient may be angry or ungrateful towards you. Don't let them get you down; remember to love, honor and value yourself.

8. Maintain Your Health

You can't expect to care for someone else if you can't even look after yourself. Make sure you're eating three balanced meals a day. When you don't eat properly your energy levels drop and it's easier to feel depressed and over-stressed.

Don't let yourself get run down. Moderate exercise - even just taking a walk - helps you relax. Put exercising, or at least going out, once a week down on your checklist of things to do. Breathing exercises - which can be performed anywhere if you can't get out - can also help you to relax your body.

Try to get at least seven to nine hours of sleep every night. Too little sleep will make you feel even more run down and unable to cope with the stress in your life.

9. Allow Time for Yourself

Allow yourself some leisure time. Caring for another can take you away from yourself. It's OK to take a break from your caregiving role. Read a book, take a nap, visit with a friend or do whatever gives you enjoyment and relieves the pressure of caregiving.

10. Keep Your Life in Balance

Have a life outside your caregiving duties. Keeping your life in balance with your own friends, interests and activities won't be easy but it is important for both you and your care recipient. Meeting your own needs will help you bring a sense of renewed strength and commitment to your caregiving role. Take control of your life; don't allow your care recipient's condition to control you. Add one activity that you like to do to your weekly checklist (and make sure you do it!).

11. Take a Break

If you think you need a break, you probably do. Take it and realize you deserve it.

12. Communicate

Don't wait for others to ask if you need help. Ask them first. Turn to family members and friends for emotional support, companionship or occasional caregiving support.

13. Accept Help
When people offer to help, accept the offer and suggest specific things they can do. You don't have to do it all. Being "supercaregiver" brings on the exhaustion, depression, and failing health that signal burnout. Let others take over routine tasks to ease the workload. Encourage people to visit and bring news about old
friends. Discuss local or world events - anything other than your day-today reality.

14. Deflect Criticism of Your Efforts

If a relative or friend or other person criticizes your caregiving abilities, listen politely to their objections but recognize that they are not the ones providing the care or coping with the stress. If you and the care recipient are comfortable with your efforts, continue to provide that level of care. If possible, explain the circumstances and ask other family members to become involved with the care process.

15. Understand You may Experience Guilt

Realize that the feelings you are having are normal and common among caregivers. You have a hard and demanding job. Be kind to yourself and take credit for doing a terrific job. When guilt points its finger, ask if doing more is really necessary or possible. Accept your limits.

16. Watch out for Signs of Depression

The signs of depression are:

  • Lack of interest in regular activities
  • Thoughts of suicide
  • Impaired motor skills (e.g., slow, clumsy or agitated movement)
  • Inability to sleep
  • Lack of energy/fatigue
  • Difficulty thinking clearly/concentrating
  • Appetite and weight changes

Speak to a counselor or a medical professional immediately if you think you need help. Caregivers too often become depressed; don't suffer if you don't have to.

17. Know You Are not Alone

You are not the only one going through this. Many people have been caregivers before you and are willing to share their experiences with you.

18. Avoid Self-Destructive Behavior

Try not to rely on coffee, cigarettes, alcohol or overeating as a means of dealing with stress or anxiety. While they can provide a 'quick fix', these chemicals can cause health problems, anxiety and nervousness especially if you are not eating or sleeping properly.

There are many natural herbs and supplements that you can take to promote a calmer, healthier lifestyle. Recommended products include:
(Source: Prescription for Nutritional Healing 2nd Ed.:

  • Ginkgo Biloba (take as directed): An herb that may promote brain function and good circulation
  • Vitamin C with bioflavonoids (3,000 - 10,000 mg daily): May help the adrenal gland restore "anti-stress" hormone
  • Calcium (2,000 mg daily): May be lost when you are under stress
  • Magnesium (1,000 mg daily): High-stress levels may lead to magnesium deficiency resulting in anxiety and fear
  • Melatonin (start with 1.5 mg daily 2 hours before bedtime, gradually increase to 5 mg if first dosage isn't effective): Natural hormone that may promote sound sleep

19. Share Your Problems

Discuss your problems with someone you trust. You can learn how others deal with difficulties similar to yours and you may help someone going through the same thing. The more we help each other, the more we can in turn help ourselves.

20. Join a Support Group

In addition to acting as a clearinghouse for information about your care recipient's condition, support groups offer friendship and a forum where you can express your feelings and frustrations. It's natural to need support. Caregivers learn that there are other people with the same sort of problems and challenges. Understanding that problems are not exclusive to you reduces the challenge to a manageable size. Be careful when choosing a support group. Each group has a different focus. Some offer support for managing day-to-day care tasks; others focus on understanding emotional needs. If a group doesn't meet your needs, find another or start your own group. Join the ElderCare Forum message board and share experiences with other caregivers. A mutual exchange of experiences helps brings recognition of your skills as a caregiver.

21. Laugh

Laughter really is the best medicine. Laugher releases tension, eases pain, improves your breathing, elevates your mood and in general improves your outlook on life. Share a joke or a funny story with your care recipient, a friend or your support group. Watch movies or television programs that make you laugh. Try to find humor in your everyday life.

Advice for the Caregiver's Caregiver

Being the primary caregiver can be very taxing on one's system. If you know someone in this role don't hesitate to let him/her know you are there. There is always something you can do to help out whether it is direct or indirect. Here are some words of advice:

Volunteer Your Services

Let him or her know that you are willing to help. Don't wait to be asked. Draw up a schedule of times when you will be available or a list of things you can do to help. Even simple errands, such as volunteering to pick up a book at the library or drive children to after-school activities can be a huge help. If you don't know what help you can give, ask.

Respect Their Limitations

Respect the limitations on help the caregiver is comfortable accepting. He or she may not want you to baby-sit or help with housekeeping chores. Don't push the issue. It isn't personal.

Offer to Stay

Offer to stay with the care recipient so that the caregiver can take a break if you are comfortable doing so. Learn about the care recipient's behaviors so you can all feel more comfort if you are left alone with the care recipient.

Avoid Off-hand Comments

Remember that caregiver of a person with dementia may be very sensitive to jokes or off-hand comments about the disease, regardless of how kindly meant or lighthearted those comments may be.

Share Information

Feel free to share any information about dementia that you come across, but do not try to push any specific treatment or therapy on the care recipient or the caregiver.

Be a Friend

Above all, be a friend. Let the caregiver vent her/his anger or frustration, pour out grief and fears, or just talk calmly and rationally about the situation. Don't judge his/her efforts, criticize the results or try to minimize the problem.