COVID-19: Supporting and Caring from Afar

Dr Sarah Russell RGN is a Professional and Practice Development Facilitator, Dementia UK and family carer.

We are in exceptional times, and people are providing care in extraordinary ways. On the 30th January 2020, the World Health Organisation (WHO) announced that the COVID-19 (Coronavirus) outbreak was a Public Health Emergency of International Concern. By March, it was described as a pandemic (WHO March 2020), with recommendations that Strategic Preparedness and Response Plans aim to slow and stop transmission, provide optimised care for all patients and minimise the impact of the epidemic on health systems, social services and economic activity. There is no one-size-fits-all approach to managing cases and outbreaks of COVID-19, with each country assessing its risk and implementing the necessary measures (WHO March 2020). The health and economic situation is constantly evolving, and in the UK, there are daily government and Public Health England  updates.

It is a challenging time for all. Recently, Dr Mark Roberts wrote about facing a new reality and the needs of the 'frail older' individual within the wider healthcare system and society. And he is right, this public health emergency is challenging us in new ways, especially for those living with dementia. How do they sustain a connection and relationship with family members who do not live with them, are caring from afar and with visiting restrictions for people in every setting? Moreover, how much are family visitors an essential part of a person’s well-being; contributing essential emotional, psychological and spiritual support especially at the end of life? It has been pointed out that family carers are ‘co-workers’ in supporting patients; as well as ‘clients’ in their own right (Ewing and Grande 2013). Furthermore, Julia Jones (co-founder of Johns Campaign) writes powerfully in a recent blog about maintaining John’s Campaign Principles through the Coronavirus outbreak arguing that family carers are not visitors, adults may depend upon someone else, usually their closest relative for their survival and we mean their survival as a person, not just their existence in a body.

Care homes are also on the COVID-19 clinical front line. In the UK, approximately 416,000 people live in them (Laing and Buisson 2016). 70% of people in care homes have dementia or severe memory problems (Alzheimer’s Society 2019). This population requires specialist dementia care and is especially vulnerable to the transmission of COVID-19, requiring complex levels of physical, emotional, social or spiritual care from care home staff, multi-professional teams and family visitors.

Over the past few weeks, care homes have responded creatively to restricted visiting. Mother’s Day Sunday in the UK saw a plethora of digital and two-metre visiting such as ‘Skype Cuppas and Get Together’, cards, flowers and placards through closed windows. Adam Purnell, Domiciliary Manager at Kepplegate Ltd in Blackpool reports other innovations such as a care home ‘virtual fun’ network, with TaiChi, group singing, a virtual visiting lounge for families and residents to talk with each other as well as staff moving in to care for residents.

But it has been a challenge. Homes are required to care in extremely difficult circumstances, balancing the individual rights and person centred needs (CQC 2015) of residents with those of the whole home, staff and government instructions.  George Coxon, lead for Devon Kite Mark, comments: “We are doing our very best to balance extremely tough decisions and do the right thing…we know many difficult decisions are ahead but always in partnership with our residents, families and staff”. George and his team check out with families how they want to be communicated with and make sure photos are shared with families.

On the evening of the 23^rd March, the Prime Minister, Boris Johnson instructed the nation that we could only leave our homes for the following limited purposes:

1. shopping for basic necessities, as infrequently as possible
2. one form of exercise a day - for example a run, walk, or cycle - alone or with members of your household;
3. any medical need, to provide care or to help a vulnerable person; and
4. travelling to and from work, but only where this is absolutely necessary and cannot be done from home.

Inevitably, this causes further restrictions on visiting people living with dementia in all settings, with subsequent concerns about the ‘what ifs’ if the person is distressed by the lack of face to face contact with a family member or their absence at the end of their life. Does ‘helping a vulnerable person’ include emotional well-being and end of life care?  Kepplegate ltd has considered the ‘what ifs’ of end of life, where family members are offered the option to move in for that period. This attention to detail in the dying period is by no means the exception. George Coxon comments “if someone is severely ill, how could we even dream of family members not being involved?”. Honest, sensitive conversations about the risks, benefits and national guidance requirements are essential to individualise care in a meaningful way.

Advance care planning conversations have never seemed more important. I realise it is different for everyone, but two weeks ago, as I visited my elderly parent in their nursing home, I checked in with them about their previous advance care planning decisions and wishes. I visit nearly every day, and I foresaw a time when I may have to self-isolate, or the home would restrict visiting. This would impact upon my parent, as daily conversations and visits are an important part of their emotional, psychological and spiritual wellbeing. The conversation was reassuring. They were not afraid of dying. Death (from COVID-19 or any other condition) would not be an unexpected visitor. Their concern was solely about not causing harm to others, how to keep in touch, to hear the family news and to be able to share theirs: “Do not be afraid: I’m not. Just make sure that I can see and hear you, your sister and brother, especially when I am dying”.  Joanne Moore Ballentine (2020) recently wrote that how that palliative care has never been more important and is just as critically needed as fluids, fever reducers, and respirators…”to keep the ‘care’ in healthcare, even as systems, patients, and providers are under siege” (Ballentine, 2020).

Some ideas for how family and friends can keep in touch

(Bear in mind the frequently updated national guidance, regulations and international evidence base)

• Talk with each other and/or the setting to discuss and agree on the individually best way to stay in contact. 
• Encourage friends and family to post letters, postcards and letterbox sized parcels with news, photos or small gifts e.g. books, magazines, puzzles, toiletries, flowers etc: “I bought in advance and made sure everything can fit through a post box so I don’t need to go to the post office. I send cards, letters and small gifts that I know they will enjoy”
• Consider postcard Apps which will automatically post your photos on a postcard from your mobile phone, tablet or computer.“Their granddaughter sends photo postcards from their phone, so that they don’t feel forgotten” Ask if you can leave a small packet of several letters or small gifts in the home to be opened every day. Put the day or date that they are to be given “ This meant I knew that every day they had something from me”
• Discuss and agree a regular time of the day when you can phone/WhatsApp/video call them or they can contact you. Don’t forget to set up group chat function for family members to join in.“ I know they are really busy, so I hate to disturb them, but it’s lovely to know that every day between 3 and 4pm we will talk or Skype…the smile on their face was lovely to see”
• Arrange sharing of photos via email or text, so that others can see what everyone has been up to.“ It’s difficult to talk to him on the phone, but when I see photos of him in the garden, doing stuff, it reassures me that he is okay”
• Be innovative, perhaps you see each other through the window or you can join in virtually with activities e.g. choir, poetry or creative writing. “ How about ‘a skype cuppa together’, just for 5 minutes – a bit of fun but vital connection”
• Consider the use of audio recordings or videos to listen to or watch. “I record myself going for a walk and describe the sounds and sights of the stream, leaves and sky for my Mum, so that she can hear the sound of my voice. I’m thinking of recording stories for her to listen to. When she hears me, she turns her face towards the sound” 
• If appropriate and possible, consider a tablet or mobile phone device so you can stay in touch - but be mindful of people’s confidence with them.
• Think about family photos (hard copies and electronic photo frames) that can be used in conversations and activities. Don’t just display them, comment and talk about them.
• Make sure you have consent for sharing photos on social media or with each other.
• Check out useful resources such as Dementia UK’s Caring from a distance and other information British Geriatrics Society advice,  Viral Kindness postcards, Get coronavirus support as an extremely vulnerable person guidance and local COVID-19 Mutual Aid groups.
• Be brave and take the opportunity to start a ‘What if you became ill’ conversation, so that you can consider, discuss and document advance care planning. 
• If you/they are in a care home, hospital, hospice, supported living or own home consider and talk about the exceptional circumstances of when and how you could visit e.g. if they were dying, or if their individual needs required more contact for their wellbeing. Bear in mind changing guidance about social distancing. 
• Be kind to yourself and others. These are extraordinary times for everyone.

References:

Alzheimer’s Society. (2019). Facts for the media, Alzheimer’s Society. https://www.alzheimers.org.uk/about-us/news-and-media/facts-media (accessed 18/03/20)

Ballentine SM. The Role of Palliative Care in a COVID-19 Pandemic. Shiley Institute for Palliative Care. 2020. https://csupalliativecare.org/palliative-care-and-covid-19/  [Accessed 22^nd March 2020]

Care Quality Commission (2015) Guidance for providers on meeting the regulations –Regulation 9 . Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (Part 3) (as amended) Care Quality Commission (Registration) Regulations 2009 (Part 4) (as amended) https://www.cqc.org.uk/sites/default/files/20150324_guidance_providers_meeting_regulations_01.pdf (accessed 25th March 2020)

Dementia UK https://www.dementiauk.org/

Ewing G, Grande GE (2013). Development of a Carer Support Needs Assessment Tool (CSNAT) for end of life care practice at home: a qualitative study. Palliative Medicine; 27(3): 244-256.

Julia Jones (March 16th 2020) Maintaining John's Campaign Principles through the Coronavirus outbreak: Care Homes (accessed 16^th March 2020)

Laing and Buisson Survey (2016) Enabling Research in Care Homes http://enrich.nihr.ac.uk/page/understanding-care-homes (Accessed 16/03/20).

WHO (16th March 2020) Critical preparedness, readiness and response actions for COVID-19 . Interim guidance 16 March 2020 . WHO/COVID-19/Community_Actions/2020.2