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Dementia Awareness Week

This week is Dementia Awareness Week and the theme this year is ‘Unite against dementia’. It is often said, ‘when a diagnosis of dementia is given, it is given to the whole family’ and therefore, uniting to support carers and families of a person with dementia must remain a top priority.

It is estimated that dementia costs the UK economy £26 billion and this figure is set to rise. Informal care provided, unpaid, by family and friends to people with dementia has been valued at £11.6 billion – 44% of this cost (Alzheimer’s Research UK). Carers may spend many hours looking after relatives and friends with dementia. A carer recently said to me, “There are three eight hour shifts in a day, you know, and we cover them all”. It’s important that carers have access to breaks on a regular basis, whether this is from a care agency providing care to the person with dementia while the carer takes some time for themselves; or engaging the person with dementia in activities and groups where the carer knows they will be safe and stimulated.

Dementia is a complex, unpredictable, long term condition and carers may find themselves caring for many years. Carers of people with dementia who are over retirement age – a time when they should be able to relax and try new things – can find themselves working harder than ever.

“I am 89 now, I am supposed to be retired. I want to care for my wife but this is the hardest job I have ever done”

When speaking to a carer recently after a stressful event, they explained that carers tend to expect the unexpected. While caring can build resilience in carers, it’s important for us to remember that they are not invincible. In a recent Carers Trust survey, over 80% of carers aged 60 or over said they had at least one health condition themselves, with 83% directly attributing this health condition to their caring role.

It is clear that carers are vital to our society and our economy. They give up their time, social life, work and financial security to look after others. In return, we must ensure they get a better deal when it comes to their own health.

Carers Trust have been campaigning for local authorities to add a question to the free NHS Health Check which will enable carers to be identified earlier in their caring journey and offer them appropriate support. If you are in contact with your local Health & Wellbeing Board, ask them to consider this as an option, or raise it with your local Healthwatch.

Carers are renowned for not putting themselves first, but they must; and we must unite behind them and do more to make this possible. It is not selfish for carers to look after themselves, it is vital. After all, who is going to care if the carer no longer can?

If you are a carer, why not contact your local carers’ service to see what support is available for you? You can find your local service here. You could look at our Carers Road Map, a guide which provides advice and information along your caring journey. You could also download our ‘Time to think about you’ prompt card and put it somewhere visible as a daily reminder to think about you.


Blog by Louise Marks, Dementia Policy and Development Officer, Carers Trust

May 14, 2017 Posted by | Dementia, Health, NHS, Older carers | 2 Comments

Retirement on hold for unpaid carers

Most of us dream of a retirement when we can put our feet up, live stress free and take up that activity or hobby we had never before had time to do.

For an ever increasing number of people, however, this dream falls flat when someone close to them has a long term illness, disability or is struggling with drugs and/or alcohol use.

Today Carers Trust launched a new report – Retirement on hold (PDF, 406KB) – supporting older carers. The report sets out the issues older carers told us they faced, and makes recommendations to ensure older carers get the vital support they need now and in the future.

Carers Trust are calling on local and central government to ensure the growing numbers of older carers are well supported and are considered a priority when planning services for the future; after all they have given up their well-earned retirement and are increasingly at the sharp end of the social care funding gap.

The growing population of older carers

It is widely recognised that we have an ageing population, people are living longer and often with multiple long term health conditions.

Alongside the growing numbers of older people with poor health, we have a growing population of older carers who are looking after them. The number of carers aged 85 and over grew by 128% in the last decade (Carers UK and Age UK, 2015).

As we get older we feel increasingly tired, and may develop our own age-related health problems.

Under normal circumstances we would slow down, take a rest in the afternoon, sleep late and generally take it easy. This is not possible for the growing numbers of older carers who say they are exhausted.

“When I was at work and was sick I could take time off and rest. That’s not possible now, I have to haul myself out of bed to take care of my mum.”

“I have worked all my life, but this is the hardest job I have done. I never dreamt I would be doing these things for my wife. I want to do it but it I must admit it was a steep learning curve, I am 90 now and have had to learn new skills to care.”

Campaigning for older carers

Over the past year, Carers Trust has been working to increase awareness of the issues faced by older carers, and campaigning to ask for a better deal for older carers when it comes to offering them vital support.

Carers Trust has run two successful actions as part of the campaign. The first action saw carers and supporters contact over 300 local councillors to ask for improved coordination of care services, to prevent them having to attend multiple appointments and make multiple phone calls.

In the second action, nearly 250 carers and supporters contacted their local Clinical Commissioning Group and Health and Wellbeing Board to ask for a better deal when it comes to carers’ health.

We must prioritise carers’ health

It is well recognised that caring is a risk factor when it comes to our own health. We must prioritise carers’ health, make it easier for them to take time out to attend appointments and keep up activities.

After all, if a carer is forced to stop caring because they are unwell, the person they care for is likely to need crisis or unplanned care, costing the health and social care systems time and money that could have been better used for prevention.


Blog by Louise Marks, Dementia Policy and Development Officer, Carers Trust

February 7, 2017 Posted by | campaigning, Health, Isolation, Older carers, Social Care | 5 Comments

Carers need to put themselves first

As children we are taught to put others before ourselves and we carry this notion into adulthood. I would like to challenge this notion, especially where carers are concerned.

Carers have a constant worry about what would happen to the person they care for, if something happened to them; yet for too many their own health concerns are put on hold, ignored or just not met.

A new Carers Trust survey of older carers reveals more than 80% of carers had at least one health condition, with 66% directly attributing it to their caring role. Astonishingly, over 50% reported 3 or more health conditions.

The survey backs up what we already know about carers, that they put their own health on hold. Over half, 57% of carers, said they had postponed or cancelled their own appointment or treatment due to their caring role.

We can’t ignore carers’ health issues

Carers are all too often going without enough sleep, are unable to take time to exercise and giving up activities and hobbies they enjoyed, contributing further to their poor health.

We cannot afford to ignore the health issues faced by our growing population of carers. More people than ever are caring, and caring for longer and later in life. Carers are vital in supporting the stretched health and social care system. It is therefore imperative their own health is prioritised.Speak up for older carers campaign logo

Putting our self first when it comes to health is not selfish and we should not feel guilty, it is vital especially for those people with a caring role.

Carers Trust is calling for local authorities to use their power and add a question to the free NHS Health Check, asking if people have a caring role.

This will help identify carers early, ensuring they get the advice and support they need to look after their health long term.

To take part in the action and find out more, see our Speak up for older carers campaign.


Blog by Louise Marks, Dementia Policy and Development Officer at Carers Trust

December 6, 2016 Posted by | Health, Isolation, Older carers | 2 Comments

Dying matters to carers

This week is dying matters week, the week will be used to highlight the importance of having conversations with our close family members and friends about what we would like when we are at the end of our life, and how we would like to be remembered. We are encouraged to get ‘our house’ in order and to fulfil as much of our bucket list as we can. Continue reading

May 12, 2016 Posted by | Health | 1 Comment

Visiting is not just for Christmas

Winter has taken a while to reach us this year but the cold weather has definitely arrived! Winter can be a difficult time for all carers, particularly those who are elderly or care for an older or physically disabled person. Some older people and those they care for can find moving around very difficult and for some people any movement without help is impossible. It is this group of people who are at the highest risk in winter – not just from the cold itself, which can be devastating, but from isolation, loneliness and depression. Continue reading

February 1, 2016 Posted by | Health, Isolation, Mental Health, Older carers | Leave a comment

Better Care for Carers – just a concept?

I’ve yet to come across anyone who would disagree with the concept of joining up health and social care. Who would? No one would want to experience being passed from pillar to post, navigating a complex health and social care system, dealing with department after department, repeating themselves time after time, all under a siege silo mentality. Clearly it would be bad for service users, carers and those who work across health and social care, wouldn’t it? Sadly though, joined up health and social care has long just been a concept. Continue reading

June 25, 2015 Posted by | Funding, Health | | 2 Comments

New Government, new MPs – what next for carers?

It’s fair to say that the general election result was as much of a surprise to us at Carers Trust as it was to everyone else, including the Conservative party. We were all set to fire off briefings to those brokering potential coalitions, asking them to prioritise social care, but none of that turned out to be needed.

So now we are taking stock. Continue reading

May 13, 2015 Posted by | Benefits, Funding, General Election, Health | 2 Comments

Reaching the forgotten flu fighters

Every autumn, staff working on the frontline of the NHS form an orderly queue, roll up their sleeves and have their annual flu jab. Such enthusiasm to be vaccinated reflects a general consensus that flu can be very nasty and, in some cases, fatal. In fact, who could disagree with the rationale – that if healthcare staff don’t get vaccinated, they could pass the virus on to their patients, some of whom will be particularly susceptible to developing complications. And of course, who will look after the patients if healthcare staff go down with the flu and are too sick to care for them?
Continue reading

December 1, 2014 Posted by | Health | , , , | 1 Comment

Penguins, pledges and pinky swears

For me the day began with a walk past eagles with their wings outstretched, catching some rays in the early morning sun. I was heading to a room in London Zoo. In a few hours 40 young carers and young adult carers would turn up ready for a day of discussion, questions and campaigning. The NHS was bringing together important decision-makers such as Simon Stevens (Chief Executive of NHS England), Neil Hunt (Chief Executive of the Royal College of GPs), Wendy Nicholson (Professional Officer School & Community Nursing at Department of Health) and Xane Panayiotou (Department for Education). These decision-makers are involved in areas such as school nurses, GPs and new legislation to give stronger rights to young carers. Others oversaw big chunks of the NHS, such as services for people with long-term conditions and improving patient experience. They were coming to the event to listen to young carers and young adult carers in order to act and improve the NHS for them. Continue reading

November 5, 2014 Posted by | Health, Young carers | , , , | 1 Comment

The silent enemy: How PTSD damages our soldiers

Note: The following blog post has been contributed by a guest blogger.

It’s sometimes hard to believe that people still refer to post-traumatic stress disorder (PTSD) as ‘shell shock’, and dismiss it as something and nothing.

For those living with the condition on a daily basis this attitude is understandably hurtful, and if you come across anyone who doubts that PTSD is a real thing, the infographic at the end of this post should give them an idea of how devastating it can be…

Do you know, for example, that 40 soldiers died serving in Afghanistan in 2012, but during the same year 50 soldiers and veterans committed suicide?  Although not all of these suicides can necessarily be attributed to PTSD it is known to be one of the possible consequences of the condition if left untreated. Continue reading

February 6, 2014 Posted by | Health, Mental Health, Relationships | , , , , | 3 Comments