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Monday, 23 June 2014

A holistic approach to multiple long-term conditions

One of the great myths around dementia is that it exists in isolation. If every person with dementia was only living with dementia and no other conditions, and they weren't at more risk of developing other conditions during the course of their dementia, then care and support would be infinitely more straightforward. The reality, however, is very different.

The description 'multiple long-term conditions' is relatively new terminology, and the knowledge around how to manage multiple long-term conditions isn't comprehensive. We don't know enough about the interactions between different conditions, or indeed how the associated polypharmacy (where a person is taking multiple medications) is going to affect each individual now and in the future.

Some conditions are explicitly linked with specific forms of dementia, a classic example being the association between vascular problems (IE: high blood pressure, heart disease and stroke) and vascular dementia. More generally, there have been many headlines written linking diabetes with dementia, and for people with a learning disability and dementia, the risk of epilepsy is increased.

There is so much more to this multiple condition landscape though, and a person who is living with dementia could quite easily be living with many other conditions that aren't specifically linked to their dementia but add additional layers of complexity, medication and even danger into their lives. Examples would include asthma, arthritis, ME, osteoporosis, eczema (and other skin conditions), coeliac disease and the many different cancers. Never forget also the numerous individuals who live with chronic pain, given that we know pain is very poorly recognized and treated for people with dementia

As a person ages they are also at more risk of hearing loss and sight loss. Macular degeneration, for example, can leave an older person blind. Coping with that type of sensory loss when an individual has dementia is inevitably going to make adjusting to losing your sight considerably more difficult, and likewise will make living with dementia much more complex and potentially lead to even more exclusion and loneliness. Equally, if joints like knees and hips begin to wear out and need replacing, that can also be very difficult for a person with dementia in terms of their ability to consent to an operation and successfully complete the long-term rehab that’s required.

Dementia can also lead to the development of other conditions, either though the progression of a person’s dementia or because they haven’t received optimum care – examples include: incontinence, dysphagia (swallowing problems), pressure sores (pressure ulcers), dehydration, malnutrition and the many circumstances that can lead to temporary or permanent immobility.

Equally, whilst being focused on the different physical conditions that a person with dementia can develop, it's important to remember that there are many mental health conditions that can live alongside dementia, and indeed sometimes be mistaken for dementia. Two of the most common are depression and delirium.

Yet despite all of the links that can be made very logically between multiple long-term conditions we are not good at treating people holistically. The NHS is largely organized to treat individual conditions, but as our population ages and more people live with multiple long-term conditions the need for that holistic model of care will only grow.

Worryingly then, I've heard of huge difficulties in providing care and support to people who are living with diabetes and dementia. These are two of the most common long-term conditions in the UK today, and the numbers of people living with both are likely to increase, particularly with obesity levels rising. Mismanagement of diabetes can have life-threatening consequences, and just because a person has managed to keep their diabetes under-control prior to developing dementia is no guarantee that they will be able to in the future as dementia complicates their landscape.

The challenges of caring for people who are living with dementia alongside other conditions are huge. A person can forget why they need to take certain medications, avoid particular foods or drinks or participate in certain tests, all of which can adversely affect the management of conditions that they live with alongside dementia.

One of the great mantras of my work has always been that a person with dementia will not be able to manage their dementia alone long-term. This is an even more prudent comment when you consider the other conditions a person may have that they require a family carer, alongside health and social care professionals, to help manage and support.

Only by treating and caring for a person in a holistic way throughout their entire life with dementia can we truly hope to meet the aspiration of enabling them to living well with dementia. Whole-person care, as part of the more widely recognized person-centred care model, is the only way forward. Expanding that to relationship-centred care will also enable carers and families to be seen as partners in care and receive the support that they need too.

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886
Please note: In 2015 the NICE/SCIE 'National Collaborating Centre for Social Care' will publish guidance on the Social Care of Older People with Multiple Long-Term Conditions. Find out more here.

Sunday, 15 June 2014

Carer's questions - How do I look after myself?

Welcome to the last of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."


For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 


Day 7 - How do I look after myself?

Most carers are great at caring for others, but less good at caring for themselves. In my case once a carer, always a carer – I’m still much better at looking after others than I am myself. Sadly I no longer have my dad to care for, but my love and dedication towards him is now focused on the rest of my family, sometimes to my own detriment.

I have no excuses though – I should be able to recognize when I need to give myself some TLC. However, in the pressure cooker of caring, with its intensity and all-consuming nature, carers are renowned for being terrible at spotting when they need help themselves, sometimes leading to severe consequences for their health.

I remember many people saying to me when my dad was alive and I was trying to juggle 10 different tasks at once that I needed to take some time out for me. Switching off is actually extremely difficult though, and knowing we were always just a matter of hours from dad being intensely poorly (infections always hit him fast and hard) made any concerns I had for myself pale into insignificance. Carers are always reminded that if you are poorly your loved one will suffer too, but whilst that’s great advice the practical application is much more difficult. 

As more carers try to juggle multiple responsibilities, and are perhaps caring for more than one family member or friend, they are likely to think even less about themselves. The toll on their health can be huge, and can lead to the carer needing care, particularly if they are an older person or have other long-term health problems. Your GP practice can advise on a carer’s health assessment – remember, taking care of YOU is important too.
 


Further reading:

D4Dementia: 'Caring for carers'
External links: 
Dementia Action Alliance Carers' Call to Action: http://www.dementiaaction.org.uk/carers
Carers Trust: http://www.carers.org/
Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

Saturday, 14 June 2014

Carer's questions - Is this normal?

Welcome to the sixth of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."


For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 


Day 6 - Is this normal?

As a carer with no medical background whatsoever, I found that one of the biggest challenges in caring for my dad was understanding what was happening to him during his dementia. I suspect that anyone who is caring for a person with complex cognitive problems is destined in some regard to struggle – even professionals can find it hugely difficult. In fact, taking that into account just imagine what it's like to actually be the person LIVING with dementia.

When you are a carer and your loved one cannot communicate easily or respond to you in ways you expect, finding an understanding between you both can be a steep learning curve. I managed to find other techniques beyond traditional speech to communicate with my dad (read my blog about expression), and in fine-tuning those it has hopefully made me a far more intuitive person. Finding the subtleties, sensitivities and sometimes tiny movements that indicate the communication of a particular message from your loved one isn’t easy though.

Whenever you are going through a rough patch, and encountering actions or situations that you find difficult to cope with, it’s inevitable to wonder if they are ‘normal’. Defining normal is almost impossible, since one person’s normal is another person’s abnormal (or indeed somewhere in between). Over time you do get a sense of what is your loved one’s normal, but that takes patience and involves trial and error.

No person is a behaviour, and whatever you are going through with your loved one underneath those immediate concerns is still the person. It’s easy to lose sight of that sometimes, and indeed overly stress about changes that we don’t consider ‘normal’. Trust your instincts; if you feel something is wrong seek help, but at the same time consider what you are really experiencing – the progression of dementia is such that either temporary or permanent changes in a person may be within what is their ‘new’ normal.

D4Dementia blog posts that I frequently signpost dementia carers to:


Communication: 'Talking the talk'


Aggression: 'Understanding aggression'

Swearing: 'Turning the air blue'

Disorientation/confusion/frustration/paranoia: 'Day-to-day with dementia'

Hallucinations: 'Another world'
 
Further reading:

D4Dementia: 'Caring for carers'

External links: 
Dementia Action Alliance Carers' Call to Action: http://www.dementiaaction.org.uk/carers


Carers Trust: http://www.carers.org/

Next post on 15 June 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Friday, 13 June 2014

Carer's questions - Does everyone feel that they can’t cope?

Welcome to the fifth of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."


For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 


Day 5 - Does everyone feel that they can't cope?

Possibly not everyone, but certainly most carers feel like this during their caring role and often feel like it frequently. I personally don’t ever recall meeting a carer who at some point didn’t feel that they weren’t coping, and that includes carers from many different backgrounds. 

In my father’s 19 years with vascular dementia I struggled when big decisions had to be made, mostly health-related, or when we were waiting on the decisions of others, usually healthcare professionals. The absolute worst times, however, were when dad was seriously ill in hospital – as a carer you feel helpless and often very excluded from what is happening to your loved one. In those times I honestly wondered how we would get through it – the fear of losing dad was huge and so very real.

It’s easy to believe that you are the only person feeling like this. When my dad was alive I wasn’t involved in the online ‘carer community’ at all, but having become connected to it through my work
 I can see how valuable it is. A huge number of carers contact me through social media seeking advice, and I’m always very happy to help where I can. I also regularly look at the #dementiachallengers hashtag on twitter - it's a place where anyone and everyone can come together to talk about dementia.

One of the most powerful testimonies of the power of social media for carers comes from the wonderful Sally who tweets as @nursemaiden. She engaged with twitter in the last hours of her father’s life, looking for reassurance with the palliative care that she and her mum were providing. Why you might ask? Simply because twitter offered her instant and informed advice thanks to the huge number of experienced professionals on the site.

A small plea from me though – for all that is great online, and there is a huge amount, we must never forget people who aren’t online. Having a computer and broadband (plus someone to teach you) isn’t an option for everyone due to cost, preference or other associated reasons. It is those people who are possibly feeling like they can’t cope most of all – another great reason why we should all look out for our neighbours and friends more, and signpost to helplines and printed materials.
 
 


Further reading:

D4Dementia: 'Caring for carers'
External links: 
Carers Trust: http://www.carers.org/
Next post on 14 June 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Thursday, 12 June 2014

Carer's questions - Is it wrong to want something more for myself?

Welcome to the fourth of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."


For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 


Day 4 - Is it wrong to want something more for myself?

This is perhaps the one question carers, people who are often naturally more selfless than selfish, struggle with. I had huge battles with myself over balancing my dad’s needs with my own. It isn’t easy to be in your twenties and watch your friends furthering their education and beginning exciting careers and not doing the same yourself.

Choosing not to do what everyone else was doing had nothing to do with coming from a privileged background or not wanting to work - quite the opposite in fact. I just realised that dementia was a terminal disease and that I had limited time left with my dad. Spending as much time with him as possible had to be my priority. 

There are huge and inescapable practical considerations for carers around finances, working and/or studying. Caring can be all-consuming, yet with a pitiful carer’s allowance and with many people finding trying to claim it impossible, it can make paying your bills a huge worry. For many people caring isn’t for a set period of time either, so trying to plan for future study or a career can be really difficult.

Respite care for your loved one is vital to give you some work or study options, but as we all know respite can be unavailable, expensive or unworkable for far too many families. By way of offering a bit of hope, however, I have known of carers who’ve made a success of home-based work solutions, started up their own enterprise with products or services that they’ve identified a need for, embarked on distance learning courses or managed to negotiate flexible study or work arrangements.
There is no denying though that for most people this is difficult, if not impossible, until after their caring duties end, hence why my career only began at 31 after my father passed away.

Further reading:

D4Dementia: 'Caring for carers'
External links: 
Dementia Action Alliance Carers' Call to Action: http://www.dementiaaction.org.uk/carers
Carers Trust: http://www.carers.org/
Next post on 13 June 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 11 June 2014

Carer's questions - What about my emotions?

Welcome to the third of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."


For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 


Day 3 - What about my emotions?

In my second blog post for Carers Week I wrote about some of the emotional reactions carers can have. There are numerous documented accounts of how carers have become emotionally drained (an example here), and many a health or social care professional will be familiar with the emotional breakdown that carers can have when their caring role feels overwhelming.

For some carers, having a person listen to how they are feeling can be very cathartic. Listening is such a simple thing, yet most of us often find ourselves too busy to stop and take time to hear how someone is really feeling. Many a carer has said they are ‘fine’ when asked, even though deep down they are anything but. No one should be sobbing into their pillow at night because no one can hear their cry for help.

What most carers are desperate to avoid is breaking down in front of the person they are caring for. There was many a time when I fled to the bathroom to avoid my dad seeing me cry. I can testify that it is immensely difficult to control your emotions to the point where the person you are caring for never sees that you are upset, especially when very often that person would be the one individual who, perhaps under different circumstances, would be the person most likely to listen and comfort you.

You may find other family members or friends don’t understand how you are feeling emotionally, or how going without sleep, becoming exhausted and perhaps feeling poorly yourself can impact on your ability to feel emotionally strong. Most of us have a tipping point, when one too many difficulties or battles just tips us over the edge and into either anger or upset. Don’t be too hard on yourself in those times – letting your emotions out is better than bottling them up. For anyone caring for a loved one with dementia, my blog posts ‘Dementia’s emotional rollercoaster’ and ‘A sense of loss’ may help.
 
 


Further reading:

D4Dementia: 'Caring for carers'
D4Dementia: 'The carer's job description'

All D4Dementia blog posts for Carers, including many with tips and advice on coping with particular aspects of your loved one's dementia
External links: 
Dementia Action Alliance Carers' Call to Action: http://www.dementiaaction.org.uk/carers
Carers Trust: http://www.carers.org/
Next post on 12 June 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Tuesday, 10 June 2014

Carer's questions - Is it ok to ask for help?

Welcome to the second of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."


For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 


Day 2 - Is it ok to ask for help?

In my first blog post for Carers Week 2014 I touched on the isolation carers often feel. With this in mind, many carers don’t feel able to ask for help. This can be for a variety of reasons – they may feel ashamed that they need help or can’t cope, they may be frightened of the consequences of asking for help, perhaps fearing that their loved one might be ‘taken away’, or they may simply not realise that they need help until it’s too late.

As a country we don’t routinely offer help to carers. People fall into a caring role and are generally expected to just get on with it. Some proactive health and social care professionals might offer help without it being asked for, but generally it will take a crisis for help to be forthcoming, and even then it may not be.

Defining ‘help’ is difficult, and will mean many different things to different people. I could mean training in certain aspects of caring, particularly around personal care, operating equipment, administering medications or moving and handling. It may mean a chat with a professional to understand changes in the person being cared for or the likely progression of an illness or disease. It may mean practical advice on housing, finances or future planning. Or it may just be someone who is prepared to listen and be a shoulder to cry on when it all gets too much.

Being a carer is complex and the needs of each carer will be different. Some people require a lot more support than others, but both should be equal in the way we respond. Kindness, compassion, information, help and advice should never be rationed.
 
 


Further reading:

D4Dementia: 'Caring for carers'

D4Dementia: 'Be inspired, be very inspired'

D4Dementia: 'The carer's job description'

All D4Dementia blog posts for Carers, including many with tips and advice on coping with particular aspects of your loved one's dementia

External links:  

Dementia Action Alliance Carers' Call to Action: http://www.dementiaaction.org.uk/carers 

Carers UK: http://www.carersuk.org/

Carers Trust: http://www.carers.org/ 

Carers Direct: http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx 

Carers Week: http://www.carersweek.org/

Next post on 11 June 2014.
Until then...


Beth x







You can follow me on Twitter: @bethyb1886