When Dementia and Loss Overlap

A framed picture of a lone tree sitting on a wooden desk

When dementia and loss occur together, the experience of grief can become more complex and less predictable. Memory, recognition, and understanding may shift from day to day, making it difficult to know how loss is being processed or expressed. This is made more challenging if the individual already experiences challenges in communicating needs or emotions.

For individuals in the IDD community, this overlap can create additional layers of uncertainty and instability. A person may understand that someone is gone, and then later ask for them again. They may experience the loss multiple times, each with its own emotional or behavioural response. Or they may not appear to respond at all, even when something significant has changed.

This does not mean that grief is absent.

It may mean that grief is being experienced in ways that are not consistent or easily visible.

In these situations, support often requires a different kind of attention. Rather than focusing on helping the person “hold onto” a fixed understanding, it can be more helpful to meet them where they are in the moment. If they are asking about someone who has died, the response does not always need to be the same each time. What matters is how the information is received, and what support is needed in that moment. Clear communication and unambiguous language is important when communicating loss.

When memory changes, grief does not disappear. It finds different ways to return.

There can be a natural uncertainty around whether to repeat information about a loss or to redirect. There is no single answer that fits every situation. Some individuals may benefit from being reminded gently and consistently. Others may experience distress each time the loss is reintroduced. Paying attention to how the person responds can help guide these decisions over time.

Familiarity and routine can also play an important role.

Even when memory is inconsistent, a sense of connection can still be present. Photos, music, shared spaces, or simple rituals can provide moments of recognition that do not rely on full understanding. These moments can offer comfort without requiring explanation.

It is also important to recognise that grief, in this context, may not follow a clear beginning or end. It may come and go, or repeat in ways that feel unexpected. This can be difficult for those providing support, particularly when it feels like the loss is being experienced again and again.

Support, here, is not about creating a single, stable understanding. It is about meeting the needs of the individual at that particular moment. Finding different ways to express the loss might lead to discovering a term or expression that resonates.

It is about remaining responsive. Adjusting as needed. And recognising that even when memory changes, the need for connection, reassurance, and presence remains.

Grief is not something that is resolved once. It is something that is met, again and again, with patience and care.