How to Say Goodbye to Someone With Dementia

With dementia, goodbye doesn’t arrive all at once. The person you knew may fade over years, and many families find themselves wondering whether there is anything left to say goodbye to, whether it matters if the person won’t understand, and what to do if the death comes when you’re not there. This guide offers what research and dementia organizations say, and leaves room for the fact that every family’s goodbye looks different.

Why is this goodbye so complicated?

Because the loss often comes in stages. The Alzheimer’s Society (UK) notes that many carers say they’ve already started grieving while the person is still alive, as the dementia has progressed over a long period and changed the person they see. That can make the final goodbye feel both too soon and long overdue. The same organization adds that other people may assume you’ve already grieved, but whether or not you have, many people still feel grief when the person dies.

If this resonates, see our guides on grieving someone who is still alive and what to do when a parent no longer recognizes you.

Does it matter if they won’t remember my visit?

Probably more than we assume, though the research here is limited, and it’s worth knowing exactly what it shows.

In a 2014 University of Iowa study, 17 people with Alzheimer’s disease and 17 healthy comparison participants watched sad and happy film clips. The people with Alzheimer’s reported elevated sadness or happiness lasting up to 30 minutes, even though they had little or no memory of the films, and sadness tended to last a little longer than happiness. The people with the worst memory for the sad films tended to have the longest-lasting sadness. The researchers concluded the emotional life of a person with Alzheimer’s is “alive and well,” and that caregivers’ actions toward patients really do matter.

What the study does not show: it was a small, short laboratory experiment using movie clips, measured over 30 minutes, and it did not test visits from family or what happens over days or weeks. Its authors acknowledge limitations. So it’s reasonable to read it as support for something many families sense, that the feeling of a visit can outlast the memory of it, not as proof of how any one person will respond.

How can I make ordinary visits count, and end them calmly?

The Alzheimer Society of Canada and the Family Caregiver Alliance offer practical suggestions for visits to a person with dementia:

• Find the best time of day, and ask the caregiver or staff what works best. Keep the visit’s length appropriate to the person
• Shorter and more often can be better. The Family Caregiver Alliance notes that the person usually doesn’t remember whether you were there five minutes or five hours, and says visiting three times a week for 20 minutes can be better than once a week for an hour
• Be prepared to listen, to remain open and empathetic if the person wants to share feelings, and allow quiet time, which the Alzheimer Society of Canada describes as meaningful
• End on a natural transition. If you’re concerned the person will be upset when you leave, the Society suggests planning your departure around an event, such as going to a meal or an activity, which can make for a natural end to the visit and a helpful distraction

These aren’t rules, and a hard goodbye at the door doesn’t mean you did something wrong. Distress at partings is common, and staff often know what works for the person.

What helps in the final days, when words fade?

The Alzheimer’s Society’s end-of-life guidance is especially helpful here because it shifts the focus from what to say to how to be present. It notes that near the end, the person may hardly be able to communicate as they usually would, but may still sense what’s happening around them and respond with basic gestures such as smiling or squeezing your hand, and may become distressed by harsh noises or commotion. Its suggestions include:

• Don’t rely on words. Use simple gestures, body language, facial expressions, and gentle touch
• Stay close and keep eye contact as much as possible
• Take your time, and speak slowly in short, simple sentences
• Talk about things of interest to the person, or reminisce
• Use familiar sounds, smells, and sensations, for example hearing a song from earlier in their life, or having skin moisturised or hands massaged with a familiar product
• Keep talking, even if you don’t think they can follow. They may respond to the tone of your voice and feel a level of connection even if they don’t understand the words
• Use physical contact such as holding hands or a hug, starting small and watching for signs the person is happy to be touched
• Look for signs of discomfort or pain. The Society stresses that people with dementia are not less able to feel pain, so tell the care team if you see signs of it

The Alzheimer’s Society also suggests an environment that is peaceful and not overstimulating, with familiar objects and pictures, music, familiar smells, perhaps a window or access to nature, and room for the people who matter to the person. Some care homes offer “Namaste Care,” which offers social and emotional support through activities like gentle massage, moisturising the face, brushing hair, or playing favorite music. For more on being present at the bedside, see how to visit someone who is dying and being with someone at the moment of death.

What can I say?

There’s no correct script. Short and warm tends to work. These are our own illustrations, not clinical advice, and you should use your own words:

• “I’m here with you.”
• “You’re safe. You’re loved.”
• “Thank you for everything you’ve done for us.”
• A favorite memory, told simply
• The person’s name, and yours, said slowly

If you want something for yourself as well, such as asking for or offering forgiveness or saying thank you or I love you, see what to say to someone who is dying. You can say these things whether or not you believe the person understands, and you can also write them in a letter or say them aloud after the person has died.

What if I can’t be there?

Distance, illness, facility limits, or timing can keep you away. Some options:

• Tell the care team what you want. The Alzheimer’s Society advises telling health and social care professionals about your own wishes, including the need to say goodbye and whether you want to be with the person at the end, if possible
• Ask about video or other ways to connect. The Society notes that images or videos on a tablet or computer can help the person engage with the world around them, and may be especially helpful if family and friends can’t get to their bedside. Ask staff to help set it up and to hold the device where the person can see and hear you
• Ask staff to do the small things you would have done, such as holding a hand, playing a song, or using a familiar scent
• Seek spiritual support. The Society suggests talking to staff about faith-based support and turning to a religious leader, such as a rabbi, imam, priest, or chaplain, if that matters to you

What if I miss the moment?

Many people do. The Alzheimer’s Society notes that knowing when someone will die is unpredictable. Some people die when family steps away, as discussed in why people wait until family leaves to die. If you weren’t there, you didn’t fail the person. Guilt is common afterward, along with numbness, sadness, relief, regret, and a feeling of having lost your purpose; see caregiver guilt, relief, and grief after the death.

How do I take care of myself?

The Alzheimer’s Society also notes that caring for someone at the end of their life can be a rewarding experience and a time of great closeness, and that carers who supported the person through dying often value this as an important memory. It also notes that support tends to be strongest around the funeral and may fade afterward, so tell people when you still need it. The Alzheimer’s Association has a free 24/7 Helpline at 800.272.3900, and many hospices offer bereavement support to family. If you can’t attend the funeral in person, the Society suggests asking the funeral organizer about joining by video link.

Write your own wishes into a Final Day Plan, so your family doesn’t have to wonder what you would want at the end.

This is general educational information, not medical or mental health advice. If you’re struggling, a doctor, a grief counselor, or the Alzheimer’s Association Helpline (800.272.3900) can help with your specific situation.