What Happens During End Stage Dementia?

In end stage dementia, the person declines dramatically and requires help with everyday functioning. The focus is on preserving the person’s dignity and quality of life. Experts suggest that signs of the final stage of dementia are:

• Bedridden – requires 24-hour care
• Unable to speak or make oneself understood
• Needs help with eating and self – care
• Loss of appetite
• Difficulty drinking and swallowing
• Unable to walk or sit up without assistance
• Contractures – a leg, arm or hand is bent and it’s very difficult to straighten out
• More susceptible to infections, such as, Urinary Tract Infections (UTI) and pneumonia

As a result of being bedbound, a person in the end stage of dementia is at a much higher risk for several medical complications, such as, getting a urinary tract infection or a pneumonia (an infection of the lungs). In addition, difficulty swallowing, eating, and drinking contributes to weight loss, dehydration, and malnutrition, which also increases their vulnerability to getting infections.

Although a person with dementia may not be able to communicate or respond to the things you say and do, there are ways you can connect with them. Below are some suggestions:

• Hold hands
• Play some of their favorite music
• Verbally tell them: I love you; I’m thinking of you, I miss you
• Read a prayer, quote or stories that have personal meaning and significance to the person
• Rub lotion on their skin
• Brush their hair
• Reminisce – look at old photo’s

You should tell health care professionals about your own wishes, including the need to say goodbye to the person and whether you want to be with them at the end of their life, if this is possible.

In the end, most people die of a medical complication related to their underlying dementia. For example, a person may die from an infection like aspiration pneumonia, which occurs as a result of swallowing difficulties, or a person may die from a blood clot in the lung as a result of being immobile. Sometimes the cause of death listed on a death certificate will say end stage dementia because dementia is a terminal illness.

Many family members caring for a person with end stage dementia feel relief when death happens—for themselves and for the person who died. It is important to realize these feelings are normal. Hospice—whether used at home or in a care community—gives family caregivers needed support near the end of life, as well as help with their grief, before and after their loved one dies.

If you need dementia caregiver support, please join my dementia support group or schedule your 30-minute consultation.