There is a particular kind of love involved in caring for another person as they age — a love that is generous, sometimes exhausting, and often profoundly rewarding. For many older LGBTQIA+ adults, caregiving is not a new experience. This community has a long history of caring deeply for its own: through the HIV/AIDS crisis, through illness and grief, through chosen families built out of necessity and belonging.

Today, as the LGBTQIA+ community ages, so too do the individuals in this community who are providing informal care — for partners, friends, family, and chosen family. And while caregiving carries meaning, it also carries weight.

Research is beginning to illuminate what that weight looks like for LGBTQIA+ caregivers in particular, and also, what helps.

There is a particular phrase that appears again and again in the accounts of family members who have moved a family member with dementia into a care home. Not anger, not relief — though both of those are present. The phrase is simpler, and harder: I feel like I've failed. For many families, this is where the story appears to end. But a growing body of research indicates it is where something else begins.

There is a moment many family carers describe in almost identical terms; a day that arrives with paperwork, practical necessity, and an ache that defies explanation. The day they hand over the care of someone they love to an unfamiliar system of aged care. For such families, the emotional meaning is rarely spoken about. Yet research suggests that within such painful experiences, something else is also possible — an unexpected capacity for growth.

For many families, supporting a member living with dementia is marked by confusion, grief, and relational loss — as friends stop visiting and some family members withdraw in distress from the person at the centre of it all. Yet research indicates that this same experience, however unwelcome, can also become a turning point for unexpected growth, deeper intimacy, and new meaning in life.

When dementia takes away speech, it can feel like connection is slipping too. But our research The Dance of Communication reveals that even without words, awareness and belonging remain.

While the terms dementia and Alzheimer’s disease are often used interchangeably, they’re not the same thing. In this article we’ll explore the difference, and how Upside Stories can support you or someone you love.

According to the 2024 Lancet Commission on Dementia Prevention, Intervention, and Care, up to 48% of dementia cases may be linked to key risk factors — many of which you can influence.