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How can I help someone in late stage dementia?

Most dementias in older persons are slow to develop. Alzheimer’s disease, the leading cause of dementia, progresses over many years.

Late-stage dementia is tough on everyone. The person with dementia may be fully incontinent, need help with eating, have difficulty walking, no longer be able to communicate, and almost certainly requires significant care. Families grieve their loss, particularly if the person no longer recognizes close friends and relatives.

How can you help someone during this part of life’s journey? Dementia expert David Troxel, who worked with the Home Instead Senior Care® network to develop its Alzheimer’s and Other Dementias Training Program, recommends these approaches:

Always approach persons with late-stage dementia with dignity. Never talk about them in their presence as though they aren’t there. Encourage caregivers to keep them well groomed, neatly dressed and clean.

Provide a reassuring touch. A gentle shoulder massage, hand rub, or friendly hug creates that needed human connection and shows the person he or she is valued.

Enjoy music. Music and song lyrics are in a different part of the brain than speech. Many individuals with late-stage dementia respond to beautiful music. They may even be able to sing an old, familiar song. Music brings happiness and joy.

Manage pain. Most persons with late-stage dementia are not able to let you know in words that they are in pain. If the person cries out, grimaces when touched, or shows other signs of pain, talk to your medical provider about appropriate medications. Watch for skin tears or bruises. Consult with a physical therapist about chair exercises or other simple stretches that can help keep them limber.

Consider a visit from a friendly cat or dog. Animals give unconditional love and the late-stage person will often take great joy from the wet nose or kiss of a dog. A cat in the lap provides an opportunity to pet the cat and enjoy its soothing purr. While it is always important to treat the person as an adult, some individuals in this stage do take comfort from holding a soft teddy bear (or substitute a baby doll).

Go outside. When possible, take the person outside to get some fresh air and sunshine, and to experience the beauty of nature. Use a wheelchair if needed. Going outside is sensory, spiritual and life-affirming. The person will likely enjoy feeling the sun’s warmth and seeing flowers, birds, and neighborhood children.

Take care of yourself. Seek out a support group or counselor to share your feelings of loss and obtain necessary support. Try to make time to exercise, eat well and spend time with family and friends.

Take a break. When you need a break, consider a professional caregiver who is trained in all stages of dementia care. “My goal was to get one smile an hour, but guess what? I often ended up with two or three,” Angela G., a Home Instead CAREGiverSM said about her experience with a late-stage person. “He seemed to understand some of my silly jokes. I enjoyed my time with him and I hope he enjoyed his time with me too.”

Take advantage of hospice care. Hospice offers wonderful services for home-bound individuals in the late stages of dementia, including assistance with nursing and medication, help with bathing, all-important respite, and spiritual support for the patient and his or her family.

Remember, the most important thing you can do during this part of life’s journey is to make sure the person with dementia knows the love and warmth of family and friends, and for you, the caregiver, to enjoy the special moments when they happen. Be sure to focus on taking care of yourself or you won’t be able to do either.

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To find a caregiver in your area, contact your local Home Instead Senior Care office.

Thoughts and stories from others

  1. September 12, 2016 at 06:16 pm
    Posted by louby

    My Dad was diagnosed with vascular dementia in June after a fall in he popped out for a paper was taken to hospital as a precaution and has since declined and went straight to a care home needing 24 hour care and needs to ve hoisted from wheelchair, to chair to bed he no longer recognises us and only seems to react to his carers. It is so sad and difficult for my mum and take in such rapid decline and we are so unable to do anything to help him .How do you deal with the guilt of not being able to help more.
  2. July 11, 2014 at 05:29 pm
    Posted by Shahira

    My mom is in late stage dementia. It's hard to feel that you can do nothing to help. But anyway I try to make every day as good and comfort as possible. I wish she is not in pain. I love her and miss her.
  3. January 12, 2014 at 01:08 am
    Posted by Gigi Perez

    I have been a home health care worker for 12 years, I was recently working for some one who does have alzheimer's, a family member has made it so difficult for me to care for their loved one. He has verbally abused me on the job and has made his wife cry and has sent her back to the room with out eating, I end up quiting I walked out and left. I have cared for a lot of clients who have alzheimer's and never delt with some one in the family with hostility, is this consider abuse?what can something be done?
  4. December 23, 2013 at 09:08 am
    Posted by Wallywalter

    Robyn, are there any State or local community agencies in your area that will help? Example being, Senior Citizen Centers or State council on Ageing.
  5. July 2, 2013 at 10:56 pm
    Posted by shirley

    dementia is a sad disease my husband has that almost on his last stage,he;s in the home now,don;t know us nomore,its hard when I visit him he sits there try to talk to him and look at you and just gets up and walk away..I miss him so much he was a hard working man he was a carpenter..seeing him that way it's so hard.

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