Blog 2: Privacy for those living with dementia
“I just want some privacy, is that too much to ask?”
I have memories of shouting this rhetorical question in my teenage years as a result of sharing a room with my younger sister growing up. What do you think of when you think of the term privacy? Is it the time you have to yourself in the car on the way home from work before you pick up the kids, writing a journal that no one else has access to or maybe you like to escape into nature for the weekend and go fishing. All these instances fulfil our human need for privacy which include having space and most importantly the conditions to be able to think, reflect and process the World around us. Realising a certain degree of privacy when you are a single healthy person is easy enough to achieve but what about when someone has a health condition like Dementia that requires 24-hour care and support?
These factors drastically change how the right to a private and family life and correspondence (Article 8 European Convention of Human Rights) are realised. Privacy is a vital human right, but it should be said that it can be restricted in some instances. This is only allowed where the authority can show that its action is lawful, necessary and proportionate in order to protect national security, protect public safety, protect the economy or protect health / morals, amongst others. Although it can be restricted like a number of other rights, they still need to be protected, with a special reminder that this may be more difficult for those who live in a group setting or those who have a diagnosis of dementia, as this naturally creates vulnerabilities and barriers for the person. When a person does not have the opportunity for time to themselves or has no space to call their own, no matter how extroverted they may claim to be, they will eventually begin to become drained, burnt out and lose their sense of identity.
“I like my privacy and I protect it quite vigilantly” – Nicole Kidman
Many celebrities such as Nicole Kidman, Scarlett Johansson and others in the public eye have spoken out against invasions of their privacy. The Duchess of Sussex, Megan Markle sparked backlash after requesting privacy and no photos of her to be taken at her recent outing to Wimbledon. A media frenzy ensued, labelling her in one scathing headline,
“'Tacky' Meghan Markle's Wimbledon row proves she's not like Diana - it's all about her”.
It is interesting how this headline and others like it, lambast celebrities and defame their character for creating boundaries on their personal space and protecting their basic human right to privacy – a right which we all have. We all have intimate moments that we don’t want to share with others. There is no entitlement to an access-all-areas pass to someone else’s life, no matter who they are or what status they have. There is a cultural belief mostly held in the UK and USA that privacy is linked in some way to secrecy and deviant behaviour. Take for example when someone chooses not to use social media, our culture has shaped us to be suspicious of this choice. We assume the person is mysterious and yearn to know more about aspects of their lives they must be hiding from the World, when in fact, they simply do not want to share private moments on the internet. With this in mind, how does this then relate to those in a care home with a diagnosis of dementia that may have difficulty in expressing verbally how they feel about their privacy or do not want to share their thoughts on issues with staff or family members. How can we understand, support and maintain their right to privacy whatever their choices may be?
What does privacy look like for those that call a care home ‘home’?
For the most part the media coverage surrounding care home settings and prejudices that the public hold as a result, are mostly negative. I have heard of assumptions that those that live in a care home do not have access to basic amenities or private space which could not be further from the truth and it is these types of views that are damaging and insulting for the social care workforce that work tirelessly to make sure that people living in a care home are well cared for and looked after.
Residents living in a care home have their own unique backgrounds, different talents and ideas about what they enjoy, different needs and different levels of ability. It is therefore important that their individuality is respected. One person’s idea of privacy may be different to another’s. Privacy does not solely refer to physical space it is also the right to have:
- Modesty when bathing and dressing
- Privacy when one's personal circumstances are discussed by others
- Respect for personal space
- Respect for wish to be alone or spend time with other people
- Respect for private correspondence
- Respect for private letters and phone calls
(Age UK, 2019)
Rights Made Real in Care Homes Project and Privacy
Throughout the Rights Made Real in Care Homes project there have been many discussions around the right to private and family life; what this looks like in practice and the art of balancing people the right to privacy for all residents whilst living in a group setting. In Laurel’s Lodge care home in Aberdeen their project is concentrating on building staff levels of confidence in anticipatory care planning through participatory workshops with the overall aim of enabling staff to feel more confident in exploring resident’s wishes in their final months, days, hours before and after their death.
One member of staff commented that although one resident was very outgoing and vivacious in life, she made the decision that she wanted a private funeral. During a workshop it gave us an opportunity to explore how this made the staff member feel, taking special consideration that she had built up a relationship with the resident.
The staff member replied that,
“That’s what she wanted, and that’s that”.
Once we explored this in more depth, it was evident that the ACP workshops had contributed to the staff member’s understanding that the resident had a right to make her own end of life decisions even when others may not understand them. The care home staff both respected her choice and helped to support the resident with the arrangements that she would have wanted.
The care home manager commented,
“If a resident has previously made a decision to have a private funeral, then this must be respected. We always ask the family if the funeral will be private or not, and then I inform the staff.”
It is also a human right to have freedom of thought, belief or religion which is covered in article 9 of the ECHR about the decisions you make in your life which is also covered under article 8 of the ECHR which includes the right to private, family life and correspondence. Anticipatory care planning and the outcome-based reviews has made a difference in helping staff to have these important and sensitive discussions with residents and their relatives (when they no longer can communicate their own views) to find out their views. It has also been the experience of staff that many residents do not want to talk about their wishes, which also must be respected.
We explored many dilemmas in practice one of which being relatives giving cakes and hard sweets to other resident’s when they came to visit. This kind gesture turned out to be dangerous for certain residents as they were assessed at a high risk of choking. It was interesting to understand how the care home manager explored and navigated this dilemma, keeping the trust of both parties without violating the person’s privacy and revealing the reason why.
“I invited our Chef Trainer in the company to one of our relatives’ meetings and discussed about dysphagia. We also have posters in the home to politely remind the relatives/visitors that there are residents (don’t say who) who are at risk of choking and that they should let the staff know if they take in food to their home. So far this has made a difference to us at Laurels as we have cooperation from relatives now.”
A creative method was used in this instance to raise awareness of dysphagia and it’s effects without compromising on individual privacy of those in question. Having the knowledge and understanding of human rights and anticipatory care planning has significantly helped to raise staff confidence by equipping them with the tools and knowledge in having these types of discussions with relatives and residents, also by understanding what is important to people and knowing the ethical boundaries in which they have to work within.
The care home manager of Laurels Lodge stated,
“I really think that promoting awareness of issues such as dysphagia and how it affects people we care for makes a difference in a way that people are able to participate in their care.”
One last scenario I thought about with regards to privacy in a care home setting was how can someone be encouraged to have private time to themselves in their own room with staff knowing they are safe. I explored this with a care home manager who pointed out that their team have checks on their residents that and especially for those who are most of risk of falls or have advanced dementia which makes them more vulnerable to risk. She also mentioned the important role and use of technology is vital in supporting the team to do this without the resident’s feeling like they are constantly being monitored. Specifically, this is done through using falls pendants, falls mats and other smart technology all of which help to promote a resident’s independence and maintain their privacy, as well as good practice and adhering to the Health and Social Care Standards by realizing the care home is the person’s home e.g. remembering to knock the person’s door before entering and respecting their privacy.
Privacy and Technology
With the dizzying pace of technological development over the last decade, the use of technology and innovative design in social care is being harnessed more than ever before. Technology can be used to help older people live independently for longer through falls alarms and electric call monitoring. Smart assistive technology such as Alexa can also be used to help with practical tasks of turning on a light or the kettle. There has been debate and talk over whether Care Bots should be introduced to help with care tasks too, but that’s got a host of ethical issues and is a whole other blog of its own. These technologies can all be used to help people to stay safe, reduce falls, promote independence and encourage better overall outcomes for people and their wellbeing.
Bruce Shneier a public-interest technologist, who has been writing on the issue of privacy in a technological age since 2004 states we need to change our view of what encompasses privacy and that people have a right to maintain their privacy in a way they feel comfortable in order to live a dignified and authentic life. What is the balance between technology that we are happy to have in our home and technology that invades our right to private and family life? Research shows that the typical person in the UK passes under 300 cameras on a daily basis, with their being as many as 11,000 cameras recording on the London Tube at any one time. As a society we have become comfortable with the idea of being monitored. The purpose of this surveillance is to deter crime and help people to feel safe. Sales of home CCTV kits are also rising with a lot of family members using them to help monitor a relative with Dementia from the comfort of their own home.
If it has become acceptable to be monitored in public and now in private under specific circumstances to maintain safety, how long before it is deemed acceptable for surveillance to be used in our homes and should it ever be acceptable under the human rights framework that we abide by. It is so important that we realise our right to privacy and work within ethical boundaries, especially when using technology in the lives of those living with dementia. A group of human rights organisations argued that secret mass surveillance uncovered by Edward Snowden was illegal. The Investigatory Powers Tribunal said that it had been illegal for years before the policy had recently been changed. It is vital that we realise our right to privacy and work within ethical boundaries, especially when using technology in the lives of those living with dementia. So, in summary, the answer to my opening question “I just want some privacy is that too much to ask?”.
It is never too much to ask for the privacy that is yours, by right.