What to expect as the person's dementia progresses

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Caring for someone with dementia can be a great reward but it can be challenging at times. Prepare yourself by knowing what to expect.

My hope for the future is more care, compassion, and understanding.

There is currently no cure for Alzheimer's disease nor can its progression be reversed. Current treatment options and brain-healthy lifestyle choices, however, can often significantly slow the progression of the disease.

What's next?

"My hope for the future is for more care, compassion and understanding. People with dementia did not choose this path. Those of us living with it take one day at a time, enjoying the good days left and keeping our special memories." Carol-Ann (pictured above), from Ontario. Carol-Ann is the caregiver for her husband, Stan, who lives with dementia.

Because dementia is progressive, you will continue to need more information and support. You may want to take time in the early stage of the disease to think about what is important to you in the years ahead.

Learning how the disease progresses and the changes it will bring can help you make plans for the future. However, only you can decide when is the right time to seek more information.

Read an overview of the stages of Alzheimer's disease.

The early stage

The early stage of Alzheimer's disease (also referred to as "mild Alzheimer's disease) refers to people of any age who have mild impairment. This differs from the term "early onset," which refers to people who have been diagnosed with Alzheimer's disease at a younger age than usual.

Some people aren’t aware that they have the disease during this stage, and they may not be diagnosed until they are past it.

Common symptoms in the early stage include forgetfulness, communication difficulties, and changes in mood and behaviour. People in this stage often need little help. They may understand how they are changing and be able to talk to others about their experience of living with the disease. They may also wish to help plan and direct their future care.

Suggestions for family members and caregivers

Learning about the experiences of people living with Alzheimer's disease can be helpful to those who support them. The following are some suggestions from people with the disease from Memory Problems?, written by the Early Stage Support Groups in the North/Central Okanagan Region of the Alzheimer Society of B.C.:

  • Please don't correct me. I know better—the information just isn't available to me at that moment.
  • Remember, my feelings are intact and get hurt easily.
  • I usually know when the wrong word comes out and I'm as surprised as you are.
  • I need people to speak a little slower on the telephone.
  • Try to ignore off-hand remarks that I wouldn't have made in the past. If you focus on it, it won't prevent it from happening again. It just makes me feel worse.
  • I may say something that is real to me but may not be factual. I am not lying, even if the information is not correct. Don't argue; it won't solve anything.
  • If I put my clothes on the chair or the floor, it may be because I can't find them in the closet.
  • If you can tell that I am having trouble, please don't draw attention to it. Try to carefully help me through it so nobody else will be aware of the problem.
  • At a large gathering, please keep an eye on me because I can get lost easily! But please don't shadow my every move. Use gentle respect to guide me.
  • Sometimes I sense that you think I am faking these problems. What you don't see is my terrible confusion and my hurt knowing how you feel.
  • I don't mean to frustrate you. I know you get impatient and tired of telling me things three times in a row. Please be patient.
  • Ask me what I think or want. Don't assume that you know.
  • Believe I still love you, even if I am having trouble showing it.

Taking care of the caregiver

A diagnosis of dementia can be difficult for everyone involved. Family members will need to take care of themselves throughout the disease process. The following are some tips for self-care and planning for the future.

  • Avoid isolation and loneliness by keeping up with social activities and contacts with others as much as possible.
  • Take care of your own health.
  • Learn about the disease.
  • Join a caregiver support group to connect with others.
  • Keep a journal of what you are doing and how you are feeling.
  • Try to keep physically active.
  • Watch for signs of stress and how it can affect your health and ability to support the person with the disease.
  • Seek professional help if feelings of depression or anxiety are overwhelming.
  • Be flexible about routines and expectations.
  • Try to be positive and find some joy in everyday things.
  • Start planning for the future with the person you support.

To learn more, read our early stage information sheet.

The middle stage

The middle stage of Alzheimer’s disease is also called "moderate Alzheimer's disease." In this stage, thinking and memory continue to deteriorate but many people will still be somewhat aware of their condition. People in the middle stage of Alzheimer’s disease need help with many daily tasks.

For families and caregivers, it is the point where they may increasingly need to provide care. It may include moving the person to a care facility. This stage often seems the longest. Everyone involved will need help and support because of the increasing challenges faced by those with Alzheimer's disease and their family.

For family members and caregivers

Even though the middle stage of the disease brings with it more challenges, you can help make life easier for the person with middle-stage Alzheimer’s disease.

Speak with a doctor about treatment options for the disease. As well, pay attention to other issues of daily health, such as regular medications and dental needs, among others. Although the middle stage requires some additional and different strategies than for the earlier stage, some of the same strategies will still apply.

Taking care of the caregiver

Despite your best efforts, caring for someone with dementia becomes harder as the disease moves on, and the person you are caring for becomes more dependent on you. This is a time when many family members need more support for themselves. The following tips are to help family members take care of themselves and plan for the future.

  • Avoid isolation and loneliness by keeping up with social activities and contact with others as much as possible.
  • Take care of your own health.
  • Learn about the disease.
  • Join a caregiver support group to connect with others living with the day-to-day issues of Alzheimer's disease and facing practical challenges, grief and loss.
  • Watch for signs of stress and how it can affect your health and ability to provide care.
  • Be aware that you may already be grieving the gradual losses caused by the disease.
  • Seek professional help if feelings of depression or anxiety are overwhelming.
  • Be flexible about routines and expectations.
  • Try to be positive and use humour as a part of care strategies.
  • Make time for yourself by using respite care options, including adult day programs, professional homecare services, other family members or friends, volunteer caregivers and friendly visiting programs.

Planning for the future

Planning for the future: Refer to and follow any documents that the person with the disease has already prepared, to help look after his financial, legal and care wishes. If plans are not already in place, start the process as soon as possible.

  • Arrange financial, legal and care matters and decide who will be responsible for these functions. Follow his wishes, if you know them. Otherwise, decisions will need to be based on his lifelong values and desires and what you think the person would want.
  • Learn about the services that will be available as the disease progresses and both your needs change (homecare, respite care, community programs like Meals on Wheels and care facilities).
  • Learn what to look for in a care provider or facility.
  • Plan for your own future. Changes throughout the disease process may affect how you will live your own life in the coming years.
  • Your local Alzheimer Society can advise you on the above issues and the kinds of professionals who can help to address them.

To learn more, read our middle stage information sheet.

The late stage

The late stage of Alzheimer’s disease may also be called the “severe” or “advanced” stage.

In this stage, the person living with Alzheimer's eventually becomes unable to communicate verbally or look after themselves. Nonverbal communication becomes increasingly important.

The person in the late stage of Alzheimer's will experience:

  • Severe impairment in memory, processing new information and recognizing time and place,
  • Losing capacity for recognizable speech and
  • The loss of the ability to eat, walk and use the toilet without assistance.

Care may be required 24 hours a day. At this stage, it's vital for families and caregivers to continue to support the person to ensure the highest quality of life possible.

To learn more, read our late stage information sheet.

End-of-life

The person in the final months of dementia will experience increased mental and physical deterioration, eventually needing 24-hour care.

When the person nears death, the focus shifts to palliative care and comfort. Still, it's vital to respect the person's wishes as they would have wanted.

As with the care of someone living with a terminal illness, the person's physical, emotional and spiritual needs must be tended with care to ensure that they are as comfortable as possible when the time of passing comes.

The needs of people living with dementia at the end of life are unique and require special considerations. Please visit our section on end-of-life care or read our end of life information sheet to learn more.

Help and support from the Alzheimer Society

Living with Alzheimer's disease at any stage can be very challenging. It is normal to feel a variety of emotions, including grief and loss, throughout all stages of the disease. It is important to acknowledge your feelings, care for yourself and seek the practical help and emotional support you need.

The Alzheimer Society in your community can provide educational resources to help you learn more about the disease, referrals to help you access the practical support you need, and one-on-one and group support to help you cope with the emotional impact of the disease.

Contact your local Alzheimer Society.

Long-term care

When a person living with dementia needs full time support, moving to a long-term care home may be the next step for you and your family.

Learn more
Smiling senior man at care home.

End-of-life care

The needs of people with dementia at the end of life are unique and require special considerations. This section can help you prepare for end of life, make some of the difficult decisions you may face, and cope with the grief and loss you might experience.

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Senior man in deep thought.

I'm caring for a person living with dementia

Understanding dementia and its progression is vital to ensure that both you and the person with dementia can live as well as possible. We have the resources to support you and your care of the person living with dementia.

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National ambassador Jane Kennedy