What to expect as the person's dementia progresses

What's next?

If you or someone you care for has recently been diagnosed with dementia, knowing what to expect as it progresses, and learning what has helped others, can greatly improve your quality of life. There are many people living with dementia who are enjoying each day, as well as planning for their futures. No matter what stage of the condition you or someone you care for is experiencing, information is important to understanding and living with it.  

Here are five tips to help you start planning ahead 

1. Read  What to expect | Print-friendly version (PDF). 
2. Arrange financial, legal and care matters and decide who will be responsible for these functions. If you are arranging matters on behalf of a person living with dementia, follow the choices the person would have made, if you know them. Otherwise, decisions will need to be based on the person’s lifelong values and desires and what you think the person would want. 
3. Learn about available programs and services (such as homecare, respite care, assisted living, long-term care and community programs like Meals on Wheels). 
4. Learn what to look for in a care provider or long-term care home. 
5. Your local Alzheimer Society  can advise you on the above topics and the kinds of providers who can provide support. 

There is currently no cure for most types of dementia—including the dementia caused by Alzheimer's disease. However, there are treatment options and lifestyle choices that can help with managing symptoms. If a person is living with cognitive impairment caused by another condition, such as thyroid, heart or nutritional disease, the dementia symptoms may be treatable. 

The stages of dementia 

Dementia typically progresses through certain stages, which are commonly described as “early,” “middle,” “late” and “end of life.” Stages are useful in helping us talk about and understand dementia symptoms. 

Everyone living with dementia is different. They may experience each of the stages in different ways, and progress through them at different rates. However, there are some common things that a person may expect as their dementia progresses.

What to expect in the early stage

The early stage of dementia (also referred to as the “mild stage”) refers to people of any age who have mild symptoms. This differs from the term "young onset" or "early onset," which refers to people diagnosed with dementia who are under age 65. 

Some people aren’t aware that they have dementia during this stage (due to mistakenly confusing their symptoms with age-related memory loss or other factors) and they may not be diagnosed until they are past this stage. 

Common symptoms in the early stage may include: 

• Forgetfulness 
• Difficulty learning new things and following conversations 
• Difficulty concentrating or limited attention span 
• Mood shifts including apathy and depression 
• Mild co-ordination problems 

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. They may also be involved in planning their future care.  

Learn about the difference between early-stage dementia and mild cognitive impairment. 

What to expect in the middle stage

The middle stage of dementia is also called the "moderate stage." In this stage, thinking and memory continue to decline but many people will still be somewhat aware of their condition. People in the middle stage of dementia need help with many daily tasks. Although a person loses many abilities as dementia progresses, it is important to focus on their remaining abilities. People living with dementia continue to experience emotions, although they may not be able to express them in the same ways they did before. 

For caregivers, this is the point where: 

• Your involvement in the person's care increases greatly 
• Moving the person to a long-term care home may be considered for the first time 
• Programs and services in your community can be a big help, providing support in the form of adult day programs, respite care and more 
• Everyone involved will need help and support because of the increasing challenges faced by the person living with dementia, as well as those who support the person 

Even though the middle stage of dementia brings with it more challenges, these strategies can help make things easier: 

• Speak with a doctor about treatment options. 
• Pay attention to other issues of daily health, such as medications and dental needs. 
• Consult an occupational therapist for advice on routines, activities and adapting the home to make it as safe and accommodating as possible. 
• Although the middle stage requires some additional and different strategies than the earlier stage, some of the same strategies will still apply. 

What to expect in the late stage

The late stage of dementia may also be called the “severe” or “advanced” stage. 

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

The person in the late stage of dementia will experience: 

• Severe impairment in memory, processing new information and recognizing time and place 
• Loss of capacity for recognizable speech  
• 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 caregivers to continue to support the person to ensure the highest quality of life possible. 

What to expect at the end-of-life stage

The person in the final months of dementia will experience increased mental and physical decline, eventually needing 24-hour care. The person can still experience emotions, but may express them differently than they did in the past. 

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 to with care to ensure the person is as comfortable as possible when the time of passing comes. 

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

Suggestions from people living with dementia

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

• "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."

For caregivers: Taking care of yourself

Despite your best efforts, caring for someone living with dementia becomes harder as the condition progresses, and the person you are caring for becomes more dependent on you. This is a time when many caregivers need more support for themselves. The following tips can help you take care of yourself 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. 
• Join a caregiver support group to connect with others 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 condition. 
• 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. 

Help and support from the Alzheimer Society

Living with dementia at any stage can be very challenging. It is normal to feel a variety of emotions, including grief and loss, throughout all stages. 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 dementia, 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 condition. 

Updated November 28, 2024