Caring for Loved Ones with Lung Disease

Every year, Carers’ Rights Day is celebrated to recognise and honour the carers in our community. There are approximately 4.7 million unpaid carers in England¹. Crucially, this day highlights the plight of all carers, from recent carers to those who have been caring for a long time without receiving support, as it raises awareness about their rights and how they can access support.

To recognise Carers’ Rights Day, we’re raising awareness about the responsibilities that many carers undertake when looking after a loved one who has developed lung disease, in particular, Chronic Obstructive Pulmonary Disease (COPD) and Idiopathic Pulmonary Fibrosis (IPF).

What is IPF and COPD?

IPF is a chronic and progressive lung disease characterised by the scarring of lung tissue. It primarily affects older adults and restricts their ability to breathe easily, which can lead to severe respiratory distress, manifesting in symptoms such as chronic cough and breathlessness. The British Thoracic Society estimates that 30,000 people in the UK live with IPF².

Similarly, COPD encompasses a group of lung conditions, such as chronic bronchitis and emphysema, which progressively impair lung function. It is most commonly caused by smoking tobacco and, according to the NHS, 1.2 million people in the UK have been diagnosed with COPD³.

Care for COPD and IPF

In a recent survey conducted by the European Respiratory Review, patients living with pulmonary fibrosis reported unmet needs for supportive care, this included access to peer support and psychological support due to the mental health burden that accompanies living with PF⁴.

Furthermore, for those living with COPD, recent research revealed that less than a fifth of patients were receiving adequate and recommended levels of care⁵.

With patients living with lung diseases such as IPF and COPD reporting inadequate levels of care, consequentially, many may have to turn to family members and loved ones to act as their carers.

The Role of Caregivers

The role of a caregiver for someone with COPD or IPF is multifaceted and can be both physically and mentally demanding. Some of the responsibilities and challenges that caregivers may face can include:

1. Assistance with Daily Activities – Due to the physically draining aspects of lung disease, in particular the breathlessness, caregivers may have to help their loved ones with everyday tasks such as bathing, dressing, and meal preparation. For patients living with COPD, up to 72% report mild-to-severe levels of fatigue⁶.
2. Managing Medication – COPD and IPF patients typically require multiple medications to manage symptoms and prevent exacerbations. Caregivers may find themselves not only ensuring that medications are taken as prescribed but also planning to ensure medications don’t run out and visiting pharmacies to collect them.
3. Monitoring Symptoms – In order to prevent flare-ups or the worsening of symptoms which could result in hospitalisation, caregivers must be vigilant, helping to monitor oxygen levels, coughing, and any changes in breathing. There are around 9000 hospital admissions for IPF every year⁷ and 73,000 for COPD reported in 2021⁸.
4. Emotional Support – Living with lung disease can be very isolating and emotionally draining. Part of being a caregiver is offering support and companionship to help cope with the mental and emotional toll of these diseases. Studies have shown that living with a lung disease makes an individual more susceptible to mental health issues such as depression⁹.
5. Education – It can be daunting to navigate the nuances of COPD and IPF; another aspect of caregiving is investing time learning about these conditions in order to better assist their loved ones by making informed decisions.

Improving Quality of Life

Here at MAC Clinical Research, we want to lift the burden on caregivers and help improve the quality of life for people living with lung conditions such as COPD and IPF, through clinical trials investigating potential new treatments.

MAC is looking for volunteers with moderate to severe COPD (aged 40-85) or IPF (aged 40+) to take part in their latest paid clinical research, investigating potential new treatment options for these conditions.

The clinical trials are running at several MAC clinics, primarily across the north of England. Eligible participants will receive reimbursement for their time and commitment to the trial, plus reasonable travel expenses will be paid, or transport provided, as well as a full medical check-up and specialist care during the trial. MAC can also accommodate for caregivers to attend clinic visits as chaperones.

For more information on either of the trials, please visit our IPF Clinical Trials webpage or COPD Clinical Trials webpage.

¹ Office for National Statistics – Unpaid care by age, sex and deprivation, England and Wales: Census 2021

² British Thoracic Society – BTS ILD Registry Annual Report 2020: a summary of the UK IPF Registry for the general public

³ NHS – Digital service to manage high-risk chronic obstructive pulmonary disease (COPD) patients

⁴ European Respiratory Review – The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review

⁵ Asthma and Lung UK – COPD in the UK: Delayed diagnosis and unequal care

⁶ Therapeutic Advances in Respiratory Disease – Fatigue is highly prevalent in patients with COPD and correlates poorly with the degree of airflow limitation

⁷ Clinical Characterisation of Idiopathic Pulmonary Fibrosis – P272 Epidemiology of idiopathic pulmonary fibrosis in the UK: findings from the British lung foundation’s ‘respiratory health of the nation’ project

⁸ Office for Health Improvement and Disparities – Interactive Health Atlas of Lung conditions in England (INHALE): February 2022 update

⁹ Breathe – Mental wellbeing and lung health