Quick reminder: In this space, we will regularly be writing about topics pertinent to dementia care, while focusing on articles, books, or online publications that have caught our attention. See our first post for more details.
From Creating Moments of Joy Along the Alzheimer’s Journey by Jolene Brackey:
When a loved one with dementia states that they want to go home, “Give them the hope that they can go home, but give them a reason to stay a little bit longer.” (p 68)
Brackey presents one of the most common dilemmas faced by residential care facilities serving individuals in the early stages of dementia; these residents often do not want to stay at the facility. This is also prevalent for individuals living at home with caregivers. The home might be their own, but it is currently unrecognizable, and they wish to leave.
Although they may consistently enjoy being with their caregivers and peers, they will have moments in which they insist on leaving. They will often talk about going home and being with their family. Please know that they are rarely referring to their most recent home. They are often thinking of their childhood home. Sometimes, they describe a fluid amalgamation of their childhood home and other houses in which they’ve resided. They will ask to be with their family members, but the particular family members might change throughout the conversation. The individual may change their focus from parents to a spouse and maybe even to children. They are less focused on a particular person (“father” becomes “brother”), or a particular place (“home” is a fluid concept), but it is important that they know they can get there and be around people they love. I often assure individuals that their families know where they are. I use their family members' names and their own personal stories to show my familiarity with their life.
For example, a caregiver could say “Yes, I know your brother Joe. He’s the architect right? Yes, he was worried you might be nervous without him and wanted me to let you know where he was. Also, he and I talked earlier, and he told me that you had piano lessons as a child.” This statement validates the individual’s anxiety, reinforces their sense of safety, and attempts to establish the caregiver as a familiar ally. The reference to the piano lessons gives the individual an opportunity to change the topic if they wish to do so.
Offering hope is an essential task for the caregiver. We are obligated to help the individual feel hope for the future as they adjust to the new norm. Whether a patient is living in their own home with a caregiver, in a skilled nursing facility, or in a fancy assisted living community, they have lost an immense amount of independence. Coping is complicated, but a caregiver can help the individual cope by giving that individual purpose (asking for help) and assigning tasks that will help the patient. When a patient has to complete physical therapy regularly, or take care of a pet, they are building toward some kind of future.