Introduction to COPD
The term Chronic Obstructive Pulmonary Disease (“COPD”) refers to a group of conditions that cause breathing difficulties e.g. emphysema, chronic bronchitis. COPD is a progressive illness for which there is no known cure but treatments are available to help relieve the symptoms as they become more apparent.
The symptoms and the effects of COPD worsen over time t o the point where they can seriously affect your ability to take part in everyday activities without treatments that can help keep the condition under control. Broadly speaking the condition mainly affects smokers that are middle aged or older.
There are people who think that COPD is not a serious illness or that it occurs very rarely. This is not true. Currently there is an estimated 3 million people living with diagnosed COPD in the UK. This makes COPD the second most common lung disease in the UK (Asthma being the most common).
What is COPD?
COPD can remain a silent and undetected illness for years. The most common trigger to developing COPD is smoking or exposure to air pollutants. Many people do not even realise that that have COPD until it becomes debilitating.
Over a period of time the air sacs (alveoli) in the lungs lose their stretchiness which in turn causes difficulty in breathing. This then causes a buildup of mucus deep in the lungs which then reduces lung capacity, so less air is taken into the lungs.
The body is slowly deprived of oxygen because of a lack of exchange of gasses at cellular level so carbon dioxide builds up in the body. This lack of oxygen, and the buildup of carbon dioxide causes damage to the lungs and other major organs over a period of time.
COPD is usually a combination of emphysema and chronic bronchitis:
- Emphysema is the result of damage to the air sacs (alveoli) in the lungs. This occurs when the alveoli become damaged. This then reduces the surface area that normally allows oxygen and carbon dioxide to exchange. There is no specific treatment for this. Severe emphysema causes breathlessness. People with emphysema may become dependent on oxygen therapy. Emphysema is usually associated with chronic bronchitis, smoking and ageing.
- Chronic Bronchitis is a long term inflammation of the airways. Attacks of bronchitis are usually brought on by exposure to pollutants that cause aggravation. It cannot usually be treated by bronchodilator drugs such as the ones used to treat asthma. Chronic bronchitis can also be complicated by acute infections.
Over time breathing problems due to COPD will worsen to the extent that it will limit normal activities.
Symptoms of COPD
As a rough guide the main symptoms of COPD are:
- Increased breathlessness. This can happen particularly when you are engaged in any physical activity such as walking up the stairs; carrying shopping; playing golf or walking the dog.
- Cough. A persistent chesty cough that tends to be ‘productive’ (with phlegm). People who are smokers will tend to brush aside the cough saying that it is a ‘smokers cough’. Most people who have COPD are smokers or ‘second hand smokers’.
- Frequent colds and chest infections. This is the cold that will always end up as a chest infection or the cold that just won’t clear up. If precautions are not taken then a chest infection and lack of movement will result in pneumonia.
- Persistent wheezing. This could be mistaken for Asthma, so it is very important that symptoms get checked out so they are correctly diagnosed and effective medication is prescribed.
If the symptoms are not treated they will get progressively worse which will cause even further lung damage. But even with the correct diagnosis, medication, care and support there may be times when a ‘flare up’ of the symptoms are experienced.
- COPD is incurable: It may not be curable but it is treatable. Lung damage that has occurred cannot be reversed, but its path of destruction can be slowed down.
- Early diagnosis helps: With an early diagnosis of COPD there is a better likelihood that further lung damage may be prevented.
- Many people believe that COPD is rare. COPD is actually the 4th leading cause of death. The top causes of death are Heart disease, followed by Cancer and Stroke.
- COPD is considered to be an older person’s illness. The chances are that some of the symptoms have been experienced since the patient was in their 20’s and 30’s.
- Exercise is possible. By gentle exercising, it causes the heart to pump a little faster which means that oxygen is transported around the body.
- COPD and smoking: There is a link between COPD and smoking (including inhaling second-hand smoke). Some people with COPD continue to smoke.
- Women and COPD: Women are more likely to be misdiagnosed with asthma than men. COPD and Asthma share similar symptoms (difficulty in breathing & bouts of coughing).
- Work choices and COPD. Your job choice can impact on your chances of developing COPD. These include bar-tending; construction, healthcare and transportation.
- COPD affects the whole body. Many people think that it only affects the lungs, but it affects the health of the whole body including mental health.
- It is relatively easy to diagnose. Simple test for COPD, breathing into a spirometer and measuring air exhaled.
Life expectancy and Prognosis – This varies from person to person. If the condition is under control with medications, physiotherapy and appropriate support, then they will be able to maintain their daily activities. But sometimes COPD may significantly impact on daily life and lead to life threatening problems.
Cancer – people who have COPD are at increased risk to develop primary lung cancer and the additional possibility of a poor outcome after receiving cancer diagnosis and treatment. This is mainly due difficulties of lung resection and an already compromised lung capacity due to COPD.
Sleep apnoea – sleep is usually very restorative, but if you suffer from COPD it can also be a dangerous time. This is because sleep can irritate the already problematic difficulties with gas exchange, which then results in hypertension and arrhythmias that are aggravated by short and disturbed sleep patterns experienced through apnoea.
Heart failure – heart failure and COPD both allow easier breathing when a body is at rest. During any activity, the blood flow needs to increase which means that the heart needs to pump faster. If the heart cannot keep up, then blood will ‘back up’ in the lungs causing congestion which is signalled by breathlessness.
Respiratory failure – this can be a complication of COPD and will need hospital treatment especially during a ‘flare up’ of symptoms. If there is a good care plan already in place with appropriate experienced carers; care and recuperation at home may be a viable option.
How COPD affects daily life
Here are two examples of the support and care that have been given to people who have COPD. The needs of the client are variable but the level of care have been adapted to their need and their personal situation. In both cases the client required specialised support for multifaceted needs.
Daniel, aged 65
Daniel was diagnosed with COPD 5 years ago. He started smoking at the age of 16 and has been a heavy smoker for much of his life. In his 20’s he played played Rugby regularly. He also enjoyed the social side of being in a team, often having a drink and a smoke after a game.
About 10 years ago he started to get out of breath easily, he put it down to tiredness and stress as he was in a very pressured job. He stopped going to Rugby practice feeling that he was ‘getting old’; he put on a considerable amount of weight and lost interest in eating a healthy diet as be always felt too tired to cook for himself.
Daniel now has portable oxygen at home and uses his inhalers. He often experiences difficulty breathing at night, which he finds quite frightening. Even with his COPD medication he finds it hard to cope with daily household activities such as laundry and additionally he finds that taking a shower can leave him out of breath.
Daniel’s Care package may include:
- On a practical level, domiciliary help with housekeeping tasks, especially housework and laundry.
- Acknowledge the need for help with personal care.
- Support Daniel to tackle sensible weight loss by supporting a GP visit and planning healthy meals.
- Empower Daniel to attend social events with the support of a care worker.
- Discuss the possibility of night-time support so that he is less fearful of sleeping at night.
- Enable Daniel to attend meetings with a counselor to help him with his depression.
It may be appropriate that Daniel initially considers live-in care until be becomes more confident and more able to take on daily activities such as personal care.
Sandra, aged 56
Sandra, lives alone as her husband passed away 6 years ago. She has two small dogs and a cat. Sandra was diagnosed with COPD only a year ago, up until then she has been treated for Asthma.
She has never smoked but was subjected to secondhand smoke throughout her life as her parents both smoked and so did her husband. Sandra retired from nursing 3 years ago. Although nursing was her life she found that she was increasingly getting out of breath and felt that she was continually using her rescue inhaler but felt it was making no difference.
Just lately, she has felt that she cannot walk her dogs as she gets tired and breathless very easily. ,She sees her family on a regular basis but no longer visits them as the journey tires her out. Lately she has found that every time that she has used cleaning products that it affects her breathing. Her doctor has suggested that as her symptoms are getting worse, that she may like to consider being cared for in a nursing home.
Sandra’s Care package may include:
- Suggesting domiciliary help with the housework (using natural ingredients) to enable Sandra to feel more comfortable in her own home.
- With the support of her GP, suggest a referral to a physiotherapist to plan an exercise regime that Sandra could do with the aid of a carer.
- Encourage Sandra to join a support group.
- Enable Sandra to look at travel alternatives so that she is able to see her family more often.
- Discuss the option of live-in care as opposed to moving to a nursing home.
There are several medications and treatments that are used to help slow down the progress of the illness. Additionally there are steps that can be taken to promote good general health:
The effect of COPD can be slowed down by using:
- Bronchodilators, (airway muscles relaxants).
- Inhaled corticosteroids to reduce inflammation and reduce the production of mucus (corticosteroids as used for asthma).
- Antibiotics to help ward off respiratory infections.
- Oxygen therapy to help maintain good oxygen saturation of the cells.
Promotion of good general health:
- Stop smoking.
- Have an annual flu shot and seek GP advice about the pneumonia vaccine.
- Eat a balanced diet that includes fresh vegetables and fruits. Reduce the amount of processed food eaten.
- Aim to exercise regularly.
- Set aside time for activities including socialisation.
- Accept support.
Guidelines and management
There are three main lifestyle changes that you can make:
- If you smoke, then stop. Your GP can help you with this by signposting you to support networks. If you are a non-smoker, then avoid second hand smoke. Avoid places where you may breathe in dust, fumes and toxic substances (than includes substances such as hair spray and harsh cleaning products).
- Have a healthy diet. Try to eat as little processed food as possible. Seek nutritional advice this can be done online or ask at your doctor’s surgery as there may be a group that supports healthy eating planning.
- Exercise, over time and done regularly this can be one of the best things that you can do to promote becoming less short of breath. You must speak to your GP who will advise you on the best exercise plan for you.
Before accessing any care package it is important that your needs are correctly and sympathetically assessed. A good care assessment sees you as a person and takes into account your medical and social needs.
Assessment for COPD care
As the effects of COPD progress you may find that you will need help and support for everyday living. The assessment is informal and it involves a senior care manager meeting you in your own home. During this meeting the care manager will get to know you as a person, how your illness affects you and the level of care that you will need initially.
They will also make a plan of support for times when you may experience a ‘flare up’. It is also an opportunity to discuss specific goals such as attending social activities, a holiday or the possibility of live in care later on.
Questions you may like to ask the care manager:
- What level of care do you think that I need at the moment?
- If I get a ‘flare up’, and need additional support for a time, how quickly can you respond to the change in care that I need?
- How often do you review my package of care?
- If my COPD gets worse, will I be able to continue to live in my own home?
- Can you help me to look at the advantages and disadvantages of having a live-in carer?
- What expectations should I have about my quality of life if I have a live-in carer?
- How do I organise the funding for my care package?
- Would my carer be able to organise my medications and communicate with my GP for me?
- Can my carer help me attend hospital appointments?
- I would like to go on holiday, is it possible that I could have a carer to support me to do this?
What sort of care to expect?
The type of care that you can expect will depend on your needs. Care can vary from a carer visiting as and when needed, or having a carer with you in your home all of the time. Your care package may include:
- Help with personal care.
- Support with taking medication.
- Assistance with household task including gardening, and looking after pets.
- Organising meals and doing shopping.
- Accompanying you when you attend medical appointments.
- Arranging for you to take part in a social activity.
- Being an advocate. Being a companion.
- Look after you at night.
If your needs are complex then rather than have one carer for each of the tasks, it may be more appropriate to have a live-in carer, for as long as you need.
If you live alone, then having a live-in carer will make sure that you have support at night when COPD symptoms can be more troublesome.
You also need to know what plans are in place should your carer become unwell. You need reassurance about continuity of care.
Who delivers COPD care?
A good care agency whose care philosophy is based on a person-centred approach is able to understand that every client is unique. A good care agency also promotes client independence, encourages a positive attitude by supporting them to achieve a good quality of life, by making choices rather than have choices made for them.
Not every care agency is able to provide such a range of support to meet the needs of the client who have very serious conditions such as COPD.
Live-in care has become increasingly popular as an alternative to moving into a care home, especially if being at home means that there are better resources that can accommodate changing health needs.
How it works
COPD is a very serious condition, and at some point it will reach the stage where it is considered to be life threatening. Before it gets to this point and in order to receive a seamless package of care, it is important to consider aspects of live-in care as opposed to a transfer to a care or nursing home at point of time when you need to be in your own home.
Advance planning for palliative care is very helpful as it means that by discussing your care plan early, you will be assured of continued care that meets with your expectations and approval. It also means that you will continue to receive treatment that will help reduce the symptoms that you are experiencing.
This may also be the point where you would consider exploring and drawing up a living will which will set out the treatments and preferences if you become increasingly unwell or too ill to be consulted.
Possible Live in care
By having a live-in carer you will have the opportunity to improve the quality of your life at the same time as living in your own home.
Your daily routine will remain unchanged, you will get to choose your meals and you will have the chance to socialise outside of the home.
Having a live-in carer can relieve a lot of stress especially if you have been experiencing difficulties with your symptoms overnight as that is the time when they can seem worse.
The cost of COPD care
This will depend on the type of care that you are receiving. The cost of care can be funded in several different ways:
- Government help (this includes local government). To determine your eligibility for funding, your needs are assessed using a nationwide criteria.
- Attendance Allowance. If you are over the age of 65 and need help with personal care.
- Personal Independence Payment (PIP). PIP has replaced DLA, but just like DLA it has two components; a daily living component and mobility.
- Personal allowances/budget. Since April 2015 everyone has a personal budget so that you have control over the service that you receive.
- Equity release schemes. Advice is to always seek independent financial advice ,as there can be pitfalls as well as positives.
- Paying for your own care. If you are not eligible for financial help from the local council then you will have to pay for your care.
But if you need care because of a COPD diagnosis then you may be eligible for The NHS, continuing healthcare termed as ‘fully funded care’, This type of care is available if your needs are over and above the the care that the local authority is obliged to provide. But you will need to be medically assessed for it.
The senior care manager that assesses your needs, can provide you with more information or signpost you to other options.