When a loved one has dementia, there are many endings that they and their family must face. Perhaps one of the most significant and difficult endings is when the decline in the person’s abilities means they can no longer live at home on their own or with family and must be moved to live in a care facility. This ending can be challenging for the person and family. While such a move can be challenging, shared knowledge and good communication between family members and staff can make the transition easier for everyone by building trust.
Let’s explore three ways that staff in long-term care (LTC) facilities can help foster a sense of safety and trust for family caregivers of a loved one with dementia.
- Understanding the unique and complicated nature of grief with dementia
- Avoiding judgments and unrealistic expectations
- Maintaining a question-friendly environment
Understanding the unique and complicated nature of grief with dementia
Grief is our response to loss, and typically it is related to a physical loss – a person’s death. When a loved one is declining with dementia, the physical person remains, while the person you know slowly disappears.
There are no words to describe this type of loss experience in which a person remains physically present while becoming more and more psychologically absent. This means that caregivers of loved ones with dementia often don’t have the language to accurately describe what they are experiencing. They may not feel that they can legitimately express grief, because their loved one is still alive. So even though they are experiencing the ‘death’ of their loved one as they once knew them, they may be unable to put a voice to their feelings or use the language of grief and bereavement and can end up feeling isolated and misunderstood.
Likewise, a common comment to a caregiver placing their loved one in a facility might be something like the following:
“It must be such a relief to have your husband looked after by someone else”, or
“It must be such a relief to know your wife is somewhere safe.”
But even if a caregiver experiences relief, it is usually only one of a complex array of emotions which may include guilt, fear of the unknown, helplessness, and sadness in response to what is sometimes referred to by family members as the ‘first funeral’. However, because there is no formal ritual to mark this significant event and the losses associated with it, family members’ grief related to their loved one’s move to a care facility often goes unrecognized.
What is helpful: Staff can help families feel seen, heard and validated as they take a significant ‘next step’ in the dementia journey by placing their loved one into care by:
- Using the language of grief and loss
- Normalizing the complexity of emotions that families may experience.
- Refrain from correcting or minimizing the person’s feelings if they use words such as ‘death’, ‘guilt’, ‘frustration’, and ‘stress’ to describe their lived experience with dementia.
Avoiding judgments and unrealistic expectations
As a person declines with dementia, the relationship caregivers have with their loved one decreases as their loved one can no longer fulfill the role they once had in a familial relationship or they no longer recognize or interact with the person who shared that relationship. Moving the individual to LTC can break the final link of shared physical presence that keeps them connected. In addition, the experience of no longer being recognized by a loved one can be such a devastating loss that a family member may detach from the relationship and stop visiting, feeling that the death of the person they once knew has already occurred. Sometimes, a spouse or partner may actually start another relationship that provides them with the companionship and intimacy that they have lost, perhaps over the course of years of caregiving. It is important to remember that there is no right or wrong way to respond to the experience of no longer knowing a person you have loved or of not being recognized by them. Therefore, it’s not helpful to judge or criticize people for how they cope with their grief for what has been lost even as they find ways to go on living.
The other thing that can happen, however, is that a family member might detach and then reattach, but in a role more like that of a parent or protector. This might happen when a family member views their loved one as being vulnerable and unable to express their wishes, describe their pain, or advocate for themselves. The resulting anxiety can have a profound effect on the family member’s expectations of staff, especially if they already feel ambivalent or conflicted about having to place their loved one into someone else’s care.
What is helpful
Tension can arise unnecessarily between staff and families when care staff are judgmental or have inappropriate expectations of the person or family. When providing care for a person with an illness as potentially devastating as dementia, staff can be supportive by seeking to understand the complex, but normal responses by family members. This is the first step in letting go of judgments and faulty expectations. And while the family’s anxiety may mean that their expectations of what care will look like for their loved one may be unrealistic, understanding where they are coming from and allowing them to voice their concerns early on, can lead to an open and compassionate dialogue about how they might work with staff to get their loved one’s needs met.
Maintaining a question-friendly environment
Asking questions can open the door to knowledge, and knowledge is a prerequisite for compassionate care. Supporting a caregiving environment where questions are encouraged can help to ensure accurate information becomes the basis for discussions and decisions. When questions are encouraged, misunderstandings and assumptions are less likely to complicate the picture. Questions are a way to gather information, but the kinds of questions asked also convey a message about what kind of information is considered important.
What is helpful
Asking family members about the personhood of the resident, not just their disease process, sends the message that personalized care, that is care based on knowledge of the person, is important.
Learning about the person and their life
Understanding the person, their life, and their preferences can affect how care is given and received. Consider asking questions to gather information about the person and their:
- Family history
- Significant relationships in their life
- Passions and hobbies
- Food likes and dislikes
- Music and movie preferences
- Past or recent sources of fear or anxiety
- Expressions of pain
- Tendencies to introversion or extroversion in social situations
Asking questions to help understand the caregiver’s experience
Questions that help staff understand the caregiver’s experience validate the expertise and knowledge they may have gained through years of living with a loved one with dementia. Asking questions like,
‘How does your mother like to be approached for personal care?’
‘What soothes her if she becomes agitated?’
‘Does she like massage? Where?’
‘How has she responded to the ongoing loss of independence?
When these types of questions are asked early in the person’s moving process, they indicate that staff are willing to learn from and work with the family to provide the best care possible.
Encouraging questions
Finally, encouraging family members to ask questions is a good way of finding out what information is important to share and how best to share it. When family members feel comfortable sharing their concerns, asking questions, and giving feedback, they are more likely to work with the care team, appreciate their efforts to provide the best care possible, and be receptive to information and resources that validate their experience of the dementia difference.
Take Home Messages
1. Because the unique losses and grief caused by dementia are often misunderstood or unacknowledged, families may approach their loved one’s move to LTC already feeling isolated and unsupported, making it more challenging, but also more necessary for staff to create a sense of trust and safety early on.
2. The move to LTC can bring forth strong, often conflicting emotional reactions and judgments within families, making it even more important for staff to approach them gently, with compassion and understanding.
3. While shared knowledge and good communication can ease the transition to care, they are not magic and do not guarantee that family members won’t struggle to cope. Therefore, staff also need to feel valued and supported through ongoing education and access to resources that promote wellness and self-care.
As always, best wishes in your caregiving.
Elizabeth and Kath
