For family members and caregivers
Suggestions for the late stage
- Connect through the senses
Even if the person can't speak to you or no longer recognizes you, she likely will still be able to communicate in other ways and feel your affection and reassurance. People in this stage experience the world primarily through their senses, so use the senses to keep connected
Remembering the past
- Touch: Hold the person's hand. Brush his hair. Give a gentle massage to the hands, legs or feet. Encourage him to stroke a pet or a soft fabric because this can be calming. If his hands are moving and fidgeting, perhaps a box filled with small and textured objects may hold his interest.
- Smell: The person may enjoy the smell of a favourite perfume, flower or food that brings back happy memories.
- Vision: If the person wears glasses, be sure they are on and clean. DVDs can be relaxing for people with Alzheimer's disease, especially DVDs with scenes of nature and soft, calming sounds.
- Hearing: If the person uses a hearing aid, be sure it is on, the battery is working and the aid is set to the right level. Reading to the person can be comforting, even if she does not understand the words. The tone and rhythm of your voice may be soothing. What you say is not as important as how you say it. Speak gently and with affection. Your tone can help the person feel safe and relaxed. Read a favourite story or poem.
- Music is a universal language that promotes meaning for most of us. Play music, especially the type of music the person has enjoyed throughout his life.
- Time spent outdoors may help relieve anxiety and depression and encourage healthy sleeping patterns. If the person can still walk or uses a wheelchair, a walk outside on a sunny day or a stroll around the facility grounds can provide needed stimulation. Indoor areas such as a greenhouse or lounge may also be stimulating
Remembering the past is a way to validate the "being" of a person and a way for the person to feel "I am here. I have a history."
- Fill a box with items that represent the person's interests, favourite activities, past work and happy memories from the past. Use these to connect to the person or foster conversation when the person is able.
- Look at photographs or DVDs of past events.
- Tell stories about past celebrations and enjoyable times.
- For many people, being part of a faith community is an important part of their identity. Tapping into the spiritual traditions that have been an important part of the person's life can provide comfort, continuity and a sense of self. Providing access to familiar rituals, symbols and music, or reading familiar scripture passages can trigger memories. These can connect with a person at a deeply emotional level when thinking and remembering have been severely affected.
- For many people, connecting to nature, music, ritual or stories can fulfill a spiritual need.
Communication is the key
Even if the person with late-stage Alzheimer’s disease may be unable to speak or follow what you mean when you speak to him, communication is still important. It helps the person maintain relationships. As his remaining abilities fade, it can be hard to figure out how to stay in touch with the person with Alzheimer's disease. It may help to remember that the person’s need for companionship and belonging remains. Even if he may no longer recognize you, the sound of your voice may be very comforting. Sometimes a smile or squeeze of your hand can show that he remembers you, even if he’s unable to tell you.
More suggestions—taking care of the caregiver
Despite your best efforts, providing care will become more difficult as the disease progresses 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 are tips to help family members take care of themselves.
- 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 what happens at this stage of 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 the signs of stress and how it can affect your health and ability to provide care.
- Seek professional help if feelings of depression or anxiety are overwhelming.
- Be flexible about what you expect.
- Try to be positive and keep a sense of humour.
- If you are providing care for the person yourself, make sure to create time for yourself. You can do this by using respite care options, professional homecare services, family members or friends, volunteer caregivers and friendly visiting programs.
Because Alzheimer's disease is progressive, you will continue to need more information and support. You may want to take time to think about what lies ahead. The next sheet in this series is The Progression of Alzheimer's Disease—End of Life. Learning how the disease progresses and the changes that it will bring can help you to make plans for the future. However, only you can decide when is the right time to seek more information.
Help and support from the Alzheimer Society
Living with Alzheimer's disease at any stage can be very challenging. Whether you are the person with the disease or someone who supports him or her, it is normal to feel a range 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 that 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 cope with the emotional impact of the disease. Contact your llocal Alzheimer Society.
[This information provides guidance but is not intended to replace the advice of a health-care professional. Consult your health-care provider about changes in the person's condition, or if you have questions or concerns.]
Last Updated: 02/13/12