Family, independence and consent
Keeping up with a parent's life from far away, and whose news it is to share
What Irish guidance and an Ontario home care organisation say about asking a person's consent before their information is shared, and a UK charity's view that newer forms of help for older people should not be seen as a substitute for human contact.
The call has ended, and you are still turning it over: the week, your mother said, had been quiet. A few days earlier, a neighbour mentioned that your mother was out in the garden most afternoons. Each piece of news came to you from someone telling it. This is information, not medical or legal advice. This article looks at where news of a parent's life comes from at a distance, and whose it is to pass on. It offers no reading of what any news means, and it does not suggest what to listen for.
Where news comes from at a distance
Writing for families caring from a distance for someone living with dementia, the Alzheimer Society of Canada suggests calls or letters as ways to swap news and learn how things are going. The same Alzheimer Society of Canada material, written for families of people living with dementia, also suggests keeping in touch with whoever helps nearby, which may include a neighbour, a friend or a relative living with or close to the person, and possibly a social worker or community agency staff; Setting up a support network from a distance goes into who those people can be.
In the US, the National Institute on Aging says that when you don't live close by, it may take more effort to find out what is going on and stay up to date with an older person's needs.
What we don’t claim here
We don’t tell you whether a change is serious, or where ordinary ends and concerning begins. No authority sets that threshold, so we don’t imply one.
Who can weigh it: your parent’s doctor or care team, who know the person and the situation. Where to take it →
Your parent first, and the people near them
Hearing from your parent about their days comes first. What a neighbour, a friend or a relative passes on is worth listening to as well, and worth talking over with your parent.
Asking before information is passed on
In Ireland, HIQA and Safeguarding Ireland's guidance for health and social care staff describes staff asking for a person's consent before sharing their personal information, telling them the reason and who would receive it, and sharing it without consent only in narrow circumstances the guidance sets out. Who the care provider talks to in your family takes this up for families.
In Canada, Ontario Health atHome, the home and community care organisation for Ontario, says it generally gets a person's express permission before sharing their health information with family members and friends who have no formal role in making decisions for them.
Newer kinds of help, and human contact
Age UK, in a UK policy position on newer forms of help for older people at home, says it is especially important that such help is not seen as a substitute for human contact, and that no one should be made to use it if they don't want to.
These sources come from different places: Canada, where the Alzheimer Society of Canada material is written for families of people living with dementia and one point is Ontario's only, then Ireland, the UK and the US. None of them is from Thailand, and how a person's information may be shared differs by where your parent lives.
A health question that comes out of any of this news is worth bringing to their doctor or care team, raised by your parent or alongside them. Anything urgent should not wait for the next call; How to reach urgent help, wherever you are is there for that.
When to ask a professional
This piece stops where a professional’s judgment starts. Bring what you’ve noticed, plainly, to your parent’s doctor or care team.
Sources
The outside sources this article draws on.
Primary: Taken from the official source itself, and cited directly. Secondary: Established in recognised guidance, summarised here.
- PrimaryNational Institute on Aging (US), What Is Long-Distance Caregiving?, content reviewed 12 October 2023.
- SecondaryAlzheimer Society of Canada (Canada), Staying connected: Care from a distance, no date given.
- PrimaryHealth Information and Quality Authority and Safeguarding Ireland (Ireland), Guidance on a Human Rights-based Approach in Health and Social Care Services, 2019.
- PrimaryOntario Health atHome (Canada, Ontario), Your Privacy Rights and Choices, no date given.
- SecondaryAge UK (UK), Policy Position Paper: Digital Assistive Technology (UK), July 2019.
Related reading
More articles in this department
How we source
Carefulness, made visible.
Named, not counted
Each piece names its sources and tags each one Primary or Secondary. It never counts sources at you.
Holding back
Where a part isn’t confirmed, a piece runs shorter and says what is missing.
Naming the limit
Every piece names where its authority ends, and who to ask instead.