Resolve to tackle loneliness

“It’ll be lonely this Christmas

Without you to hold

It'll be lonely this Christmas

Lonely and cold.”

So sang English glam rock band Mud (in the style of Elvis Presley) to top the UK singles chart in 1974, selling over 750,000 copies and reaching Christmas number one.

44 years later, and as this song joins the throngs of Christmas music on the airwaves for another year, I’ve found myself wondering if we might ever reduce the estimated 9 million+ people in the UK who are said to be ‘always or often lonely’ to closer to the number of copies this song sold back in 1974. If we could, that would mean 8,250,000 less lonely people.

The 9 million+ statistic came from research by The British Red Cross earlier this year. They described the figure as representing ‘epidemic levels of loneliness and social isolation’, and few could argue with that assessment. It’s a hugely negative reflection on our modern-day society, and ironically comes in an age where we’ve never had so much connectivity through technology and yet so many of us feel more isolated than ever before.

The reasons for loneliness in the UK are many and varied, with commentators sighting everything from social media use to poor work-life cultures. I personally feel that the English 'stiff upper lip' culture also plays a role - not wanting to admit you feel lonely or isolated, fear of being rejected if you do seek help or support or even just reach out to someone you know who may themselves be too caught up in life to respond to you in the way you hope they might, and feeling compelled to hold all of your feelings and worries within you.

Amongst those most vulnerable to isolation and loneliness are older people, those living with long-term health conditions, including dementia, and those who provide care and support for a loved one. The very nature of ageing means you lose friends and family as your peers pass away, and of course living with dementia can pose such significant challenges with social interaction that many people would rather avoid it, particularly if they haven't managed to connect with like-minded individuals through peer support (examples of peer-support groups for people with dementia include DEEP and DAI).

Indeed, such is the risk of isolation and loneliness for people with dementia that the Dementia Action Alliance 'Dementia Statements' (that I wrote about in August 2017) specifically say, "We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness." 

It’s also worth remembering that social isolation is thought to increase a person’s risk of developing dementia, hence why the importance of social interaction is highlighted as a potential preventative measure. With this in mind, in my training for care providers I talk to social care staff about the dangers of isolation and loneliness amongst the people they support and we discuss ways this can be combatted.

While staff who provide support to people in their own homes are often much more aware of the risks posed by isolation and loneliness, as many of their clients live alone, care home staff often haven’t considered that loneliness might be a significant factor in the lives of the people that they are supporting, simply because they assume that if a person is living in a communal environment they won’t be lonely. Yet quite the opposite is true - some of the loneliest people in the world are those in a room full of other people, and a bedroom can be a very isolating place if you don’t feel able, or cannot through physical or mental health issues, come out of that room to socialise with your peers.

With the festive season seen as a particularly isolating time of year, many charities and organisation are again voicing their concerns about loneliness. Last week Age UK published analysis that said 1.7 million older people in England can go for a month without meeting up with a friend, and that 300,000 over 65s have not had a conversation with family or friends over the same period. They also said that half a million older people across the UK are likely to feel lonely this Christmas, with more than 230,000 older people expected to be on their own for at least one day over the Christmas period (from Christmas Eve to New Year’s Day).

After Christmas, I predict that there will be more reports of helplines receiving record numbers of calls over the festive period. Last Christmas, The Silver Line – the only free, 24-hour, national helpline for lonely and isolated older people open all year round – reported that Christmas 2017 was their busiest ever, with over 14000 calls made to their helpline, around 1000 more than during Christmas 2016. Their greatest spike in calls was on New Year’s Day, with 1773 callers – up 14% on January 1st 2017. 

So how is loneliness being tackled? The response ranges from the Campaign to End Loneliness to the legacy work in memory of Jo Cox MP, alongside the UK government appointing the world’s first Minister for Loneliness (Tracey Crouch, who later resigned her position over an unrelated matter), and the publication of England’s first Loneliness Strategy.

But despite all of this, loneliness remains a huge issue. In the run up to Christmas 2015, I wrote for the UK Huffington Post about a campaign Friends of the Elderly were running about loneliness, and now here we are in 2018 and I have even more campaigns I could write about, which suggests we aren’t really making significant progress.

Why? Because to tackle loneliness we all have to do our bit. High profile initiatives, whilst very welcome and often packing a significant punch, can’t on their own make any individual feel less lonely, or persuade each of us to do something to help combat loneliness amongst our family members, friends, neighbours and acquaintances.

That ‘something’ doesn't have to be a huge action, it can be really small. At this time of year, just sending a Christmas card to someone you know says “I’m thinking of you.” If that person is older, not local to you, not on email and you don’t have an up-to-date phone number for them, a card is a simple way to reach out. Or for people who don’t want to write Christmas cards, donate to one of the charities that help to support people who are at risk of isolation and loneliness.

Of course there is no simple fix to the UK’s loneliness problem - a cuppa with your neighbour or having a festive clear-out and donating your unwanted items to a charity that supports people who are isolated and lonely won’t banish loneliness for every isolated person. But as you think of your New Year’s resolutions, bear in mind that a resolution to do your bit to tackle the UK’s loneliness epidemic is something that is achievable for all of us and might just make someone’s day (as well as yours).

Thank you for all your support in 2018. Until 2019...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Bringing the generations together

There have been few documentaries I’ve enjoyed as much as Channel 4’s ‘Old People’s Home for 4 Year Olds’. For me it ticked every box - it featured some amazing older people (the oldest was 102) and pre-school children (the youngest was 3), it looked at ageing, social care, healthcare, education and child development, it demonstrated innovation combined with scientific rigour, and best of all, it featured some really positive outcomes for the older people and the children involved.

It’s no surprised I loved the programme given the 9 years my dad spent in care homes, the work I do now with older people and those who provide care and support for them, and as a mum to a preschooler, my current immersion in the world of early years education. 

The seed for my enthusiasm for intergenerational work was sown watching my dad light up whenever children visited other residents in his care home. Sadly though, the time many of these children spent in the home was brief and their visits sporadic, so my dad never really had the chance to fully benefit from their presence, unlike the 10 older people featured in Old People’s Home for 4 Year Olds.

In our household, this documentary was particularly timely - in the weeks it aired we were settling our daughter into pre-school. It hasn’t been the easiest transition for her, but I am absolutely certain given her relationship with my mum (who is 79), that had she had the option to go into an early-years educational establishment that meant she shared her pre-school time with older people she would have settled a lot quicker.

The synergies for me don’t end there either. In an attempt to help our daughter settle into pre-school life I made her a memory book, which I’m gradually filling up with photos of all the adventures that we’ve had this year. A memory book for an (almost) 3-year-old - They are for older people (and people living with dementia) right? Wrong! They are amazing at every age and stage of life, and the book has been phenomenal for our daughter. It's given her pages of lovely familiar photos to comfort her and prompt her to talk about her adventures, and it's enabled her teachers to get to know her so much quicker and easier.

In essence, we are actually informally running our own mini intergenerational experiment in our house. My mum lives with us, and although I don't have scientists or experts measuring the effects of this for our daughter and my mum, I can informally categorically say that our daughter’s communication, reading, interactions and skills-set have benefitted so much from extensive time with her Granny, and for my mum, our daughter has physically and mentally challenged her, kept her going and brought so much joy, excitement and unpredictability into her life.

If my mum was living alone she would have had none of this, and would have been much more isolated and potentially lonely, as many of her peers sadly are. Meanwhile for our daughter, with the best will in the world, she would never have had as many books read to her or enjoyed so many other little learning experiences without Granny around every day. 

So, what do we learn from Old People’s Home for 4 Year Olds and my own domestic life? For me it’s that keeping generations in silos is so outdated. I’m not saying that arrangements like those shown on Old People’s Home for 4 Year Olds would work for every older person or indeed every preschooler. Some older people wouldn't want that level of noise, interaction and energy around them. Equally, some preschoolers may prefer to only be with their peers or adults of their parent’s age.

But there needs to be much more choice for everyone who would benefit. Older people who would like to interact with preschoolers could find a new purpose in life, teaching and supporting children to learn, and keeping themselves physically and mentally active into the bargain. Meanwhile preschoolers, who may have busy working parents and live long distances from their own grandparents, could benefit from the patience and time less hurried older people may be able to provide. And that, of course, is to say nothing of the exchange of wisdom that would be happening. 

For those with a less practical, romantic vision who are only interested in hard facts, muse on this. Old People’s Home for 4 Year Olds showed significant physical and mental improvements in the older people over the 3-months of this experiment, all of which could potentially cut the costs associated with their health and care needs. Examples included:

• 102-year-old Sylvia going from being classed as frail at the beginning of the experiment to being no longer classed as frail at the end of the 3-months. Sylvia's cognitive health tests also improved by +3 points.
• 97-year-old Victor improved his depression score by +3.
• 81-year-old Lavinia went from taking 495 steps per day to 1750 later in the experiment, and this despite a fall during the 3-months.

And overall amongst the older participants:

• 5/10 improved their balance.
• 9/10 improved their grip strength (an indicator of overall health).
• Almost half of the volunteers reduced their risk of falling.

The children also showed improvements, including the youngest child, Zach, improving his personal and social interactions and use of language, and Mason improving his sense of what it means to be an older person and developing his ability to nurture and be empathetic. Indeed, such is the impact of this experiment that The ExtraCare Charitable Trust, who run Lark Hill Retirement Village where Old People’s Home for 4 Year Olds was filmed, have committed to a lasting legacy for the project that will see a rolling six week intergenerational activity programme for Lark Hill residents and children from its neighbouring nurseries.

I can see so many positives in intergenerational approaches, and in the 6+ years I’ve done the work I do now I don’t think anything has excited me as much as the potential for bringing the older and younger generations together. The possibilities seem almost endless to my eager brain which is desperate to see new initiatives for the youngest and oldest in our society.

I feel we have become very stale, very staid, in our approaches to supporting people at the polar opposites of the age spectrum and it saddens me. For older people, they don’t necessarily have years to wait to get the care and support that they need, to alleviate their loneliness, to give them purpose and a reason to live the best life that they can. And for our youngest citizens, their brains are alive with possibility and opportunity, just waiting for us to ignite their imagination and feed them with the facts about anything and everything that makes up the world we live in.

For me there is no time to waste. No ifs, no buts. I’m proud that in our own little way through our domestic life that we are doing this as a family, but I would love to hear from any individuals or organisations who want to do intergenerational work like that shown on Old People’s Home for 4 Year Olds at scale. For our older and younger citizens, let’s make this happen!

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Why are you a carer?

On the face of it this is a really simple question, yet it is one that can generate so much discussion. It's something I've been asked a lot in the last few years in the context of, "Why did you care for your dad?"

People are often surprised that as a teenager, twenty-something and thirty-something I would have put my life on hold to care for my dad. Yet consider this: when people begin a family they are rarely asked, “Why would you want to have children?” despite the massive life-change and life-long commitment parenthood entails.

Although the motivation for becoming a carer, the reasons people continue with caring (often against a backdrop of significant difficulties), and the way in which many carers struggle to move on with their life after their caring role ends are very individual, there are some common themes that often surface when you talk to carers, and I want to explore those commonalities in this Carers Week 2017 blog.

Why become a carer?

Many people who’ve never been a carer often approach the topic under the premise that people who are carers have made a lifestyle choice to be so. Big mistake. I have never met anyone who woke up one morning and actively decided to become a carer for a relative or friend. Every carer I have met fell into caring for someone they love due to various circumstances, largely beyond their control, and generally never realised they were becoming a carer.

It is a well-worn phrase, but worth repeating: I never considered myself a carer for my dad, just a daughter looking after her dad.

My G8 Dementia Summit film

Do labels matter? In essence no, if you realise that you have taken on a responsibility that has consequences for your life and your health and are proactive in ensuring that you look after yourself as well as the person that you are caring for. In reality, however, the 'carer' label will - in theory - give you access to services (if they exist!) that without that label you wouldn't be able to access. If those services are fit for purpose, they can help to prevent carer ill-health and carer breakdown.

Why do you continue to be a carer?

Again, this question suggests most people make an active choice. They don't. Carers remain as carers often through a lack of choice, and as much as it may be very un-politically-correct to admit it, often through a sense of duty, obligation or necessity.

However, that isn't to underestimate the human emotions that accompany caring. They are potentially the biggest driving factor towards carers remaining as carers once you remove the 'circumstances beyond your control' element. Moreover, it's emotional ties that often keep a carer caring for longer than is perhaps good for them or the person they are caring for.

As much as caring is immensely difficult, there is something in the depths of the human psyche that wires us to prevent suffering in those we love and give comfort and support. The rawness of this emotional pull isn't the same for everyone though, which may explain why in a large family it's often one person who is the primary carer with other family members very much on the peripheries. And that is no one's fault - again, it's often a mix of circumstances with a good helping of emotions.

Why is it so hard to move on when your caring role ends?

Again, it's those emotional factors biting us in the depths of our hearts and souls. You don't spend that much time with a person, and potentially nurse them through the end of their life, only for your life to return to your pre-caring days afterwards.

For a start, the bereavement experience is very different - you aren't just grieving the loss of the person, but a loss of the purpose and routine you had. Caring, for all its challenges, is something many people become exceptionally adept at, and the feeling of doing something so important so well is a huge source of pride which can be lost when you are no longer caring for the person.

Why is capturing carer knowledge and experiences so important?

One way of combatting the loss of skills and purpose is to go into a social care role professionally, and some of the very best care workers I've met in my consultancy work have a strong background of being family carers. For other people, caring for 'strangers' is just too difficult after caring for a loved one, no matter how much we might say that 'Strangers are just friends you haven't met yet', or indeed the former carer's own health or age make such a career choice prohibitive.

My interview with Havas Lynx where I talk about the wealth of knowledge and experience carers have and the importance of capturing that

The challenge for all of us, however, is to find ways of capturing carer knowledge - at every juncture of a carer's life - to benefit others, be they family carers or professionals. And if you are a health or social care professional, NEVER consider yourself more learned or accomplished than a family carer, be they a current or former family carer. That unique pull of circumstances and emotions creates a rarefied learning experience that really is - both positively and sometimes negatively - second to none.

 

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

 

Reframing the reporting about violent older people in hospitals

Recently the BBC ran a story that over 75's are responsible for 57% of physical assaults on NHS staff in hospitals. These assaults range from biting and pinching through to some of the most serious attacks that are recorded. In trying to explain why these incidents are happening, the stress and confusion that a hospital stay can cause were highlighted, and patients who are living with the effects of dementia were inevitably mentioned.

Sadly, I think many people reading the headline and acknowledging that dementia is mentioned will, yet again, assume that all people with dementia are violent. Little consideration will be given to how hospital environments contributed to the circumstances around these incidents, or indeed how the lack of comprehensive staff training or appropriate staffing numbers did likewise.

What also won't be examined is how many people were avoidably in hospital in the first place, or who had remained there for far too long when not clinically necessary because of failings in the availability, organisation or funding of social care places. It's just quick and simple to look at older people and say: "They are violent because they have dementia and are attacking the people trying to care for them."

What has to be understood is that people with all different dispositions and from all walks of life develop dementia. If you were an unpleasant person with a quick temper and a tendency to be violent prior to developing dementia, your dementia may or may not make those character traits more pronounced.

Likewise, for some people who were mild-mannered and never hurt anyone, the development of dementia can lead to symptoms such as paranoia, hallucinations, disorientation, confusion and anxiety that can result in a person lashing out without realising they are or without intending to. It is simply their reaction to what they are experiencing in that moment, allied with the circumstances (environment, staffing etc) that they are in the midst of.

Delirium and other mental health problems that either haven't been diagnosed or aren't being well treated can also contribute, not to mention the side-effects of a medication, poly-pharmacy or indeed something as simple as a urinary tract infection, being hungry or tired - do not underestimate the effect of sleep deprivation. A person may also feel angry, ashamed or undignified if they aren't being supported to wash, use the toilet or be mobile in the way they would want to be, resulting in feeling uncomfortable or becoming incontinent or immobile.

I am not in any way making excuses for violence against NHS staff, nor would I ever condone it, but before we brand older people as violent patients I think we need to understand how being a hospital patient can make you feel.

Last year I spent one night in hospital following the birth of our daughter. All the care I received was wonderful and the staff were very kind and helpful to me. But I didn't sleep a wink. Nor did I particularly like the food. I definitely wanted to lock the bathroom door when I went for a shower, and ideally would have preferred to keep the curtains around my bed closed, but because we all had to be in view of the staff so we could be monitored, that wasn't possible except for breastfeeding or getting dressed.

Granted, I had just had a baby and hormones were going wild, but fundamentally I was a knowledgeable, articulate person who could speak up for myself and wasn't in danger of having to stay in hospital any longer than was absolutely necessary. Yet I felt vulnerable. And if I can feel vulnerable, then I can only imagine how an older person, potentially with reduced communication abilities due to their health, might feel.

I have written before about how undiagnosed pain in a person with dementia can affect that person. I've also written about unmet needs being misunderstood as 'challenging behaviour' (a phrase I hate), and about the effects of illness, incontinence, hunger, dehydration and sleep problems. I've also addressed the shortcomings in hospital environments for older people in comparison to the environments we offer children.

All of these issues can easily converge and result in avoidable incidents. Aggression is so strongly linked to dementia that I meet people who are surprised if their loved one isn't aggressive. Yet there is so much that can be done through person-centred care, occupation, reablement/rehabilitative support and life-story work to support people with dementia to cope with their symptoms.

Whilst the BBC based their story on firm evidence, with figures obtained from NHS Protect (the organisation dealing with crime across the health service), I suspect that many people simply won't see beyond the statistics and examine the real issues, let alone tackle them. As a result fear of having contact with older people and people who have dementia proliferates. With such ostracisation comes isolation, and an even greater chance of people who are already feeling misunderstood reacting to that in ways that hurt them every bit as much as those trying to provide care and support for them.

Understanding about dementia has improved over the years, but it isn't where it needs to be to provide appropriate, individualised support for every person. Geriatrics isn't an area of medicine that is oversubscribed with our brightest and best professionals in the way paediatrics might be considered to be, and ageing within our society still isn't universally viewed with dignity, respect or compassion. Often older people's services are underfunded, stretched to capacity (and beyond) and seen as little more than a 'dumping ground' for people viewed as adult babies and stripped of their identity.

We are long overdue a complete re-evaluation of how we care for older people in hospital, including the need to even be in hospital to begin with, and an honest stock-take on how circumstances (many of which we can control) result in incidents that are then beyond anyone's control, least of all the patients at the centre of them. As in all areas of healthcare, prevention is always better than cure.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Care and support in the post-Brexit landscape

Mostly I love social media and its ability to give 'real time' reaction to news and events, but I have to say that I didn't enjoy the negativity I saw this morning following the decision of the majority of the UK electorate to vote to leave the European Union.

Some of the language I have seen has reminded me of the worst of that which is associated with dementia - war-like rhetoric, stigma and a lack of respect. Whatever you believe about EU membership and however you voted, in my view this is a time for solidarity within our communities and positivity about what happens next. My only EU Referendum retweet was to share the reaction of Brendan Cox, the widower of Jo Cox MP, who tweeted this:

Today Jo wld have remained optimistic & focussed on what she cld do to bring our country back together around our best values #MoreInCommon

— Brendan Cox (@MrBrendanCox) June 24, 2016

'Optimistic and focused' sums up my mind-set entirely. Indeed, ever since I began campaigning on issues of health, social care, dementia and ageing I have lived by those sentiments (and others that are equally positive). Despite having some very negative experiences in my dad's years of living with dementia, I have chosen to work constructively to make improvements rather than constantly beat a drum of criticism and negativity.

Now, more than ever, I feel that as people who care passionately about health and wellbeing we need to follow that mind-set and address the following:

Avoid turning the outcome of this vote into an ageist agenda

Dissecting a democratic vote into age group demographics is very divisive in my opinion. Whilst statistics suggest more older people voted to leave the EU than younger people, that doesn't make either opinion more or less valid, they are simply different viewpoints. Many older people I’ve met didn’t feel that what we have is what they voted for back in 1975 and this referendum represented a chance to change the direction the UK has taken – effectively undoing a ‘wrong’ in their eyes. It is fair comment, even if you don’t agree with those individuals.

Whilst younger people may be more impacted long-term, the message has to be one of optimism and focusing on what can be created, changed and achieved, not what can't. As a new mum (of 7 months!), that is the message I will be telling our daughter when she is old enough. There is nothing you can't achieve, and that remains as much an inspiring message now as it was last week. The health and social care sectors need to promote this to young people who are considering their career options in this changing political world – they can be our person-centred, creative, energised leaders of the future.

Celebrate our current overseas workforce, support and value them, and welcome other talented individuals in the future

So much of the referendum campaign focused on immigration, which is a hot topic in UK health and social care given the reliance these sectors has had on recruiting talented, hardworking people from overseas. That reliance won’t change, so the message I would like to give our politicians as they shape the country in the aftermath of this referendum result is: 

• Every overseas worker, no matter what country they are from, who is currently here and doing vital work in health and social care must be able to continue to do that if they want to and without any barriers.
• Recruitment drives that take place overseas to fill vacancies for health and social care professionals will still be needed, and these roles need to be considered exceptional professions so that employers can make that recruitment process as seamless as possible. The only proviso is the need to be able to speak, read and write English to a high standard, which is purely a common-sense measure to ensure seamless communication and understanding in the many challenging situations people who work in health and social care face.

It is often said that overseas workers will do the work that the British-born population won't, and in both my dad's time in care homes (punctuated by spells in hospital) and through the work I do now, I have seen this consistently over many years. What I would add, however, is that as many non-EU workers cared for my father as EU workers did, so it's important to stress the diversity in the workforce that we have now as an indication of what we will need long-term.

Keep dementia care and support on the domestic (and international) agenda

With the Prime Minister resigning, there needs to be a renewed commitment from whoever takes his place to ensure that the work that has been done around dementia, notably under the auspices of 'The Prime Minister's Challenge on Dementia', continues. The first dementia strategy was launched under the last Labour government (in 2009), and whatever the future holds for the current government and the different political parties, the need for the UK to deliver the best dementia care and support in the world will not change. Likewise, the need to co-operate  and collaborate on dementia research must continue, not just with European countries but worldwide.

Going forward...

 

I would urge NHS and social care leaders to galvanise their lists of needs and wants, rather than gnash teeth and delve into the language of disaster. Vulnerable people who are in our hospitals, care homes, and within our communities who need our services, our care and our support don't stop needing that now this vote has taken place.

Now is a time to set the agenda, lead, campaign, create, change and evolve... and dare I even say unite? Should integration of health and social care be realised through the outcome of this referendum result, that, for me, would be the greatest surprise of all, but who knows? 

With an uncertain future only one thing is guaranteed - each one of us has the chance to shape that which isn't yet decided.

 

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

 

Older carers - Isolated and forgotten

Last week was Carers Week, an annual awareness raising campaign that highlights the vital role of people who care, unpaid, for family or friends. Carers Week also aims to promote ways in which carers can be better supported, which is particularly relevant for one group of carers who I feel are amongst the most marginalised in society - older carers.

While many people dream of retirement and ageing as a golden period in their life when they can pursue the hobbies they enjoy and where their time is truly their own for, potentially, the first time in their life, the reality for an increasing number of older people (70+, 80+ and beyond) is that they are taking on a new and very unexpected role - that of an unpaid carer.

Most commonly this would be for a husband, wife or partner, but potentially also for a sibling, a friend, a neighbour or even their own adult child. I personally don't believe that there is an accurate figure for how many older people are carers. Age UK reported last month that 417,000 people aged 80 and over are carers (which equates to 1 in 7 people in this age group), with 144,000 of these individuals providing care for more than 35 hours a week. However, in common with the rest of the caring population, many older carers don't identify as being 'a carer' and are therefore never counted in official statistics.

My concern is that because older carers may be even less likely to engage with carers’ organisations, both from the perspective of getting support but also participating in surveys/data collection etc, they are even more isolated and underrepresented than younger carers. There is also the double whammy effect at play – we know that as people age they can become more isolated and lonely. As a society we aren’t great at supporting our older population generally, but if you also happen to be a carer you are potentially in an even more marginalised position.

Then you can possibly add in the stigma associated with the various health conditions the person being cared for may have, which in many instances will include either suspected or diagnosed dementia. It is my view that people who care for a loved one with dementia are often even more isolated than other carers due to the lack of understanding about dementia, the complexities it can present, and the long-term, progressive nature of dementia.

Why I have a particular passion for raising awareness of the needs of older carers is largely because I've met so many of them. People who tell a tale, time and time again, of how they'd planned with their spouse of x number of years (usually a lot of years) to have a dream retirement, before the love of their life developed dementia and everything changed.

Some people remain upbeat, research the particular type of dementia their loved one has, access support independently of the health and social care systems, implement their own coping methods and get on with life. But many older people just don't have the means to begin that crucial research process and access vital support, and life begins to unravel from there.

Much of the best support available is online, through social media for example, and the internet is an amazing resource for research and building knowledge and understanding, but it only works for you if you have a computer or device that you can operate, and access to broadband to connect you to this virtual world. 

Again, some older people do, and I know from my own experience that my mum, who is in her mid-seventies, is a total convert and daily user of an iPhone and iPad. But her ability with these devices has been build up largely by living in a multigenerational household where us younger members can help her. 

I suspect that my mum is in the minority though. Far more older people live alone, or are only living with the person they care for - they aren't able to go out to classes to learn about technology, nor can they just pop down to the local library to use a computer if there is no one else to care for the person they are caring for. Leaflets in the GP's surgery or a telephone helpline may bring more accessible support into their life, but the real issues go far deeper.

They can include denial, with some older people trying - with the best intentions - to cover up the health problems that their spouse is experiencing. This further isolates them from the help they need, and keeps other family members - for example adult children - in the dark. Frequently there are also financial concerns, with people worrying about paying for professional care (thus trying to provide more care themselves and often putting their own health at risk), and a lack of awareness about the assessments they are entitled to.

The very nature of ageing, where a person is likely to develop more health problems, means that older carers are at high risk of carer breakdown. The physical and mental rigors of caring for another adult mean a move into a residential care setting for the cared for person is very likely, particularly at known key-points of acute stress, for example if the cared for person becomes immobile or incontinent. 

I suspect that all of this is just the tip of the iceberg though. I feel strongly that as a society we don't know anywhere near enough about what being an older carer is really like, and because this group of people are more isolated than many others, their opinions and feedback on their experiences and views are rarely gathered systematically or on a large scale.

As a result we don't hear their voices, and policies often don't reflect the needs this group of carers have. I sincerely hope that the new Carers Strategy, which is due to be published later this year, will include key aspirations for supporting older carers, harnessing not just health and social care in joint endeavour but also engaging the wider community.

We all have a role to play in identifying and supporting older carers, and it can be in really simple ways. For example, on a few occasions I've printed off internet resources for older people who are caring for a loved one but don’t have access to the online world. On those occasions I've also made a point of ensuring I include information about carer's assessments and carer's allowance - even if a person doesn't feel they want to have an assessment or apply for benefit at that time things can, and do, change.

As Sir Francis Bacon is quoted in saying in the maxim for his book, ‘Meditationes Sacrae and Human Philosophy' that was published in 1597, “Knowledge is power.” And it is. Moreover, when it comes to being an unpaid carer, it should never just be the preserve of the young.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook