Families Are the Forgotten Partner in Dementia Care

“One of the things about this disease – it’s in the family and the family has not only me and my wife, but we have our children and the children have their spouses. In other words, this whole thing about Alzheimer’s is not just about two people: it’s about a whole mess of people. Not only our families but our extended families and their friends. It gets very, very involved.” ~ Partial View: An Alzheimer’s Journal, Cary S. Henderson and Nancy Andrews, 1998

Professionals in the field of dementia care work hard to build the skills and knowledge to deliver quality care to persons living with cognitive loss. Credentials are amassed, skills are attained, and people enter this work armed with noble intentions and innovative practices, ready to serve the person living with dementia. Unfortunately, the work is too often approached as if it’s “us” and “the person living with dementia”—leaving little consideration for the family of the person with dementia.

Because of the deep connection within a family unit, it is a huge miscalculation to see the individual with dementia as a solitary person.

Not surprisingly, families can provide crucial insight when learning about the person. A great deal of information can also be gained by warmly welcoming families into the care process, getting to know them and hearing their wishes, concerns, hopes, and fears. Seeing the family as an integral part of the care community—as opposed to an external visitor—will support them to engage comfortably, which in turn supports the well-being of the individual with dementia.

Ann Davidson, author of A Curious Kind of Widow, chronicles her experience and emotions as the wife of a man living with Alzheimer’s. She offers the following guidance to care partners regarding how to welcome the family members of people living with dementia:

“My desire is that you respect my relative… to understand if he could do ‘things’ correctly, he would. And to understand he is a person of value and worth and peeing in the wrong white ceramic place does not make him less worthy of respect. He is doing the best that he can.

I need to know that when I am not there, you will be there for my relative. When he feels alone, you reach out. When he is lost, you find him, when he is overwhelmed, you make things simpler, more manageable, and safer.”

Davidson’s guidance speaks to three important tenets of working with families in dementia care, often expressed by relatives:

‘Know my family member and appreciate who he/she is and has been.’

It’s important to know the person living with dementia and see them for what they have accomplished in their life. Also know that the core of the person is still inside them and that while moments of lucidity come and go, they can still be joyful when recognized and experienced together.

‘Appreciate that our relationship (myself and my family member living with dementia) is still important.’

Family relationships are deep and long-lived, and the family is often mourning the loss of the relationship as they know it. It’s important to be compassionate and involve the family in a deep and meaningful way, as part of the care process.

‘I want to know staff, trust them, and include them as part of this caring relationship.’

When a family comes to your care setting or you enter their home, you are a stranger and they are living during a vulnerable time. They are often desperate to learn more about you and to ultimately trust you as they leave their loved one in your care. Be warm and welcoming. Be approachable and show interest in getting to know the family member and their loved one. Make them feel secure and include them in conversations.

Ensuring that family members are understood and welcomed into the care community from the moment they arrive will lessen the initial trauma of this transition. As time passes and family members become more settled, it’s important to provide regular opportunities for inclusion and participation in community activities. Working together, the family, the person with dementia, and the dementia professional will provide optimal care through every stage in the process.