How Can I Provide the Best Care for My Loved One With Advancing Dementia?

Although Alzheimer’s disease progresses at different rates in different individuals, the average life expectancy after an Alzheimer’s diagnosis is 8 to 10 years. As the disease progresses, the person will become more confused and find it more difficult to articulate their needs. So it is up to the person’s loved ones to decide how and in what setting to provide ongoing care. 

Hopefully, your family member has already created an advance directive, which makes their wishes known about how and where they would like to be cared for at the end of life. If they did not do so while they still had decision-making capacity,  it will be up to you and your family to determine what’s best. As the person with dementia becomes progressively more debilitated, you may need to place them in a long-term care facility if you don’t have the resources to care for them at home. 

Home hospice care may also be an option as your loved one approaches the end of life. Hospice is usually available once the person’s doctor says the person has six months or less to live. Before the person reaches that point in their journey, you may wish to ask your doctor about involving a palliative care team to help manage symptoms and improve the person’s and your own quality of life. This team of professionals will typically include a physician, nurse, social worker, and chaplain and physical and occupational therapists who are skilled at helping manage symptoms such as sleeplessness, restlessness, anxiety and depression. They will also assess the Alzheimer’s sufferer for symptoms such as agitation and pain, which often go untreated in people with advanced Alzheimer’s disease. 

As the disease progresses, the palliative care team can assist the family in making end-of-life decisions, including decisions about placement, when to involve hospice and goals of care. They may also be able to assist in arranging respite care so that the family can attend to their own needs. 

Sources

“Alzheimer’s stages: How the disease progresses”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448

“How do people with dementia die?”. Kevin MD. https://kevinmd.com/2009/11/people-dementia-die.html 

“What Is Respite Care?”. National Institute on Aging. https://www.nia.nih.gov/health/caregiving/what-respite-care