Five things I wish I'd known before my dad's dementia

I've lost count of the number of times people have asked me for tips and advice when dementia has come into their life. With more people than ever before now living with dementia, or knowing someone with dementia, it seems apt for my Dementia Awareness Week blog of 2017 to share my top five things that, with the power of hindsight, I wish I'd known before my dad developed dementia.

1)      How much life changes

It may seem remarkably obvious, but dementia changes lives. It REALLY changes lives. The problem with telling people that is, until you've experienced it, you don't realise just how much. Clearly dementia utterly altered the course of my dad's life - last month he should have been celebrating his 90th birthday. Instead, the last 19 years of his life were characterised by slow cognitive decline and eventually a very marked physical decline too.

In a very different way, my life has completely changed as result of my dad's dementia, and it will remain so for the rest of my life. Those experiences don't leave you, even if you don't go on to work with people who have dementia as I have. For me there are two ways of approaching this change - either embrace it, appreciating what you've learnt/are learning and making the most of that knowledge by sharing it for the benefit of others, or at very least, allowing yourself to be at peace with it. Or you can rail against it, trying very hard to block it out, pretending it isn't or hasn't happened. I'm yet to meet anyone who has successfully achieved the latter, but that isn't to say it can't be done. As in all things, it is a matter for the individual, but to at least have a genuine awareness of the way dementia changes lives is, for anyone affected by it, the beginning of finding the path that is right for you.

2) What to do for the best

The great problem when my dad was living with dementia is that I wasn't a researcher, or an observer of all things 'dementia'. I never Googled what other people's dad's who were living with dementia really enjoyed. Nor did I attend dementia groups, access social media extensively, or read dementia books or blogs (so the fact that you are reading this means you are one step ahead of where I was!).

I learnt what worked for my dad eventually but it was often through trial and error, and when I think back so much time was wasted. For example, I would never have persevered with ensuring my dad had TV in his room: in hindsight I would have scrapped the TV on day one and replaced it with the CD player and music collection that brought infinitely more joy to his life. I’d have made the environmental changes that personalised dad’s room much quicker, and the life story work staff asked for my help with and I took ages to dig out photos and make the memory box, I’d have done that quicker too.

We'd buy things, like CD's, for birthdays and Christmases thinking it was nice to space out the gifts. Big mistake. Dementia is terminal, you are 'on the clock' as it were. Get as many lovely things as you can afford and enjoy every single one of them as soon as possible so you have them for as long as possible. My dad was never into big birthday or Christmas celebrations, and looking back maybe he was onto something with that.

3) What my dad would have REALLY wanted

This is tricky, because no one likes to think about a loved one developing dementia and eventually becoming physically frail and needing a care home or hospital care, or deciding about resuscitation and end of life preferences. The problem with never having these conversations, however, is that you are completely in the dark when decisions have to be made, and where dementia is concerned, decisions do eventually have to be made.

The most I ever knew about my dad's wishes? Dad would walk past a particular churchyard and say he wanted to be buried there. And he would very occasionally say that if he was very ill to 'take him out the back and shoot him'.

Basically, we didn't have a lot to base our decisions on. Yes, a deep love for and understanding of my dad, and a strong sense of doing right by him and adhering to what little we knew of his preferences (of course the law doesn't allow for what dad actually wanted!), but beyond that technically it was guesswork.

So if you have a chance to talk about Power of Attorney (in England this is in two parts, Health and Welfare) or make advance care plans, do it. It's difficult at the time, but even more difficult down the line.

4) How much memories matter

There is a massive focus on lost memories for a person who is living with dementia (despite the fact that dementia isn't just about memory problems), but less focus on how those of us around the person allow memories to slip away too. All those minutes, hours, days, weeks, months and years I spent with my dad during his dementia, and yet I have a comparatively tiny collection of photos, and no videos or written diaries.

Granted, I wasn't part of the smartphone generation back then, but when I think about the amount of moments I capture as a mummy to our daughter, I hugely regret not capturing more of my dad's special moments. And they were special, so very special, even when dad's dementia was very advanced. There are no second chances to record those moments, and even if you never look back at them, at least you have them. I don't have that option now, and while the memories in my head are strong and the photos I have very precious, I could have had so many more mementoes of our time together.

5) The lowdown on care homes

When you are suddenly confronted by a doctor telling you that your father won't be discharged home from hospital but instead must move to a care home, it's a shock. It's even more of a shock when you're asked to find a care home and have no idea what you are looking for.

We first encountered that challenge 14 years ago. These days there are loads of websites offering you advice, and I weighed into that debate a few years ago with this blog. Ultimately, my very top tip would be: Don't choose a care home that looks the best, choose one that feels the best. Gut instinct is crucial. And even if you never ever plan to go into a care home yourself, or for any loved one of yours to go into a care home, it doesn't hurt to be informed. You never know when life can throw you a curve ball, and dementia is a very curvy ball.

So, there is my 'Top Five'. Please share them, add your own dementia-themed 'Top Five' in the comments, and together we can help to make this year's Dementia Awareness Week more informative for all.

Until next time...

You can follow me on Twitter: @bethyb1886

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What makes a good care plan?

One of the main dementia-related ambitions for the five years of this current parliament is around care planning. Finally we seem to be moving on from the preoccupation with diagnosis rates and the focus is moving towards post-diagnostic support, something I have championed extensively, so personally I’m really pleased about this development.

At the heart of good post-diagnostic support, indeed really at the very beginning of it following a diagnosis of a form of dementia, is for the person with dementia to create a care plan. My dad had one, in fact technically he had 3, since each of the care homes he went into made up their own care plans using their own paperwork. There was inevitably some overlap of topics, but the detail and quality of the care plans was very much dependent upon the dedication of the staff completing them and the input dad and us as his family were allowed to have.

I say allowed to have quite deliberately, because we weren't always consulted as I wrote about here, and that eventually led to a fatal outcome for my dad. Therefore the first and most fundamental pillar of any care plan, for any person with dementia at any and every stage of their dementia must be the involvement of the person and any carers/family that they have (being mindful of what carers/family can realistically cope with contributing to the implementation of the care plan in the long term). I am of course mindful that not everyone has an actively involved family, and for those people without any significant others particular care and attention needs to be given to how we create care plans with them, utilising all available means of ensuring their preferences and rights are upheld, potentially through the use of an advocate for example.

Which then leaves the crucial question about what should go into a care plan? I've seen some pretty crude models of care planning over the years, the worst of which would detail key personal information, a breakdown of the person's 'inabilities' (immobility/incontinence/swallowing problems), their inputs/outputs (food/fluid intake verses urinate/defaecation), the difficulties they pose to care staff ('challenging behaviour', needing to be fed, incontinence issues etc) and what should be done in the event of their death (choice of funeral etc). This is, I think we could all agree, the very essence of negative care planning.

Care planning using this model misses the vital factors of detailing what a person can do, what they like to do, what they may want to achieve and how they can live well. I'm not against including aspects like advanced care planning, end-of-life wishes etc, but this shouldn't have prominence in a care plan over and above detailing what the person may want in the (potentially extensive) period before they get to the end of their life. 

For many years, I think care planning was seen as a mechanism for making the lives of health and social care professionals easier. The plan would instantly flag up what the person they were providing care and support for couldn't do, and what decisions should be made at the end of their life. All fine and good for professionals, but what exactly does the person gets out of this and how does it help them to see a life beyond their diagnosis?

So, what would I like to see reflected in modern care plans? The following, in no particular order, are some suggestions: 

- Meaningful activity/occupation for a person with dementia, including opportunities to get out into their local community, understanding of their hobbies/interests/life story and any education they might want to undertake to learn a new skill/hobby, plus peer support as appropriate.

- A focus on independence and how to help the person to maintain this. 

- Spiritual/cultural/emotional care – This should go beyond just detailing a person’s religion (if they have one). 

- An onus to see an individual not as a set of 'behaviours' but as a person with symptoms that can be alleviated by person-centred care, non-drug therapies and good dementia care practices. 

- Rehabilitation / reablement techniques that could be suitable for this individual - focusing on what the person can do or could be helped to achieve (see my blog on reablement here). 

- An exercise plan, including physio/OT as required. 

- An overview of nutrition and hydration that details what the person loves to eat/drink, things they might like to make themselves, new foods/drinks they might like to try. This should go way beyond, “They like 2 sugars in their tea!” 

- An assessment of the environmental needs the person feels they have – for example, do they need help with orientation in day/time/place, signage, pictorial help with finding household items etc?

- A communications plan that looks at a person's abilities and how to maximise these rather than any deficiencies they may have communicating. 

- For the healthcare aspects of the care plan, a holistic view of the person should be documented with their help to include an understanding of any other long-term conditions they have, plus other health needs/preferences, for example: dentistry, podiatry, optometry, continence care, dietician, speech and language therapy, physio, OT etc. 

- A requirement for regular reviews of medication to guard against poly pharmacy and use of any unnecessary medications. 

- Advanced care planning/End of life wishes.

Once all that has been documented (and hopefully accompanied by a photo or two to help further personalise the plan), who should own this care plan? For many years, care plans have been owned and fiercely guarded by health and social care professionals (who would invariably each make their own plans and not share them!). Which for me begs the question, why can’t the person own their care plan?

 

The comparison between how we treat older people with dementia, and younger women who are pregnant is stark here. In maternity services, women are given their 'handheld' notes that they take to every appointment and that detail all of their medical and personal details and preferences, including giving the woman a glossary to reference all the technical terminology against.

 

This would be a fantastic model to empower people with dementia. Eventually, it can only be hoped that health and care will become more integrated and fully digitalised – and granted some areas of England are making progress here - but overall, why can’t the people who have had to give up their personal and intimate details to documentation own that documentation? I think professionals often underestimate how much a person’s privacy is invaded by the care planning process, and so I firmly believe that if a person is willing and able to retain their own care plan they should have that opportunity, something that, right now, isn’t universally available for every person diagnosed with dementia.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Challenging stereotypes about families and care homes

Ask a cross-section of individuals what they think about care homes and you will often hear negative views of both the homes themselves and the families whose loved ones live in them. Having a relative in a care home has long been seen by the ill-informed as some sort of bypassing of responsibility, but for the majority of families that couldn’t be further from the truth.

Embarking on the heart-breaking process of finding a care home, and then trying to adjust yourself and your loved one to this new way of living, isn’t quite the throwaway experience that many people - including some of our politicians - have portrayed it to be. As someone whose dad lived in 3 different care homes over a 9 year period, the suggestion that we as a family somehow negated our responsibilities towards him infuriates me.

Neither my father nor us as his family were given a choice about dad’s care: his doctors decided that he would be a danger to himself and to others if he returned home after hospitalisation for a larger stroke that had led to a diagnosis of vascular dementia. Without a health and welfare Power of Attorney (such a document didn’t even exist then) or any advanced care directives, we were powerless to change that decision, although I don’t actually believe that the doctors were wrong in their assessment.

As a family we knew virtually nothing about dementia, and there was precious little support for us in trying to understand how best to alleviate my father’s symptoms and provide him with the best quality of life possible. With dad utterly miserable in hospital, it was an immense responsibility to be charged with finding him a care home. Like many families, we had no idea what we should be looking for and moved from visit to visit almost in a daze – arguably we were as lost and bewildered as poor dad was.

Against this backdrop, imagine feeling the need to justify yourself to people entirely unconnected with your own situation who feel it is their right to sit on the moral high ground and verbally punish relatives for talking what is seen by some as an ‘easy way out’. Moreover, those who proliferate this view only serve to further stigmatise care homes at a time when they have taken an immense public bashing.

Perhaps most worryingly of all though, is that by stigmatising those who seek help to care for a loved one we are in danger of making carers – that most isolated and undervalued group of people – even more isolated. We know that carers desperately need more support but many don’t feel that they can ask for help. They fear being seen as someone who ‘can’t cope’, and feel guilty at the prospect of asking for some respite for fear of the effect on their loved one. Yet no one can carry on caring alone forever without it having potentially very serious consequences for their own health, and in turn the welfare of the person that they are caring for.

There is also a particular stigma that many families from minority ethnic backgrounds face. Their culture is rooted in caring for ageing relatives at home and in private, but at the same time they are living in a UK society that has incompatible expectations and priorities. Often in Asian countries, different generations of a family are likely to be living in the same accommodation and can share the caring duties – both when nurturing the younger generations and helping the elders. The women will usually remain at home to perform these duties and can support each other.

In the UK, women increasingly need to work in order to contribute to housing and living costs, generations often live apart (and in the future more people will age as single adults with no children), and whilst there is support from employers for parents with young families, support for those who are caring for ageing relatives is severely lacking. Many families also feel very ill-equipped to take on a caring role, especially if someone becomes very frail or has advanced dementia. If they make mistakes, or a lack of specialist equipment leads to an injury or accident, those feelings can be compounded.

At the very least most families will end up needing a level of domiciliary care in order to look after a relative and continue to work, and many will eventually need a care home if the person’s needs become very complex. Ultimately, of course, that decision can also be taken out of the hands of families by health and social care professionals. They are duty bound to act in the best interests of the vulnerable person, and indeed a carer who they may have identified as someone who can no longer go on providing 24/7 care, particularly if that carer is older and in poor health themselves or has more than one person to care for.

So the idea that somehow families are abandoning their loved ones, en-mass, to abusive sub-standard care homes is wholly wrong. For a start most care homes are actually staffed by very caring people who do a wonderful job, as I spoke about in my recent film for Care England. In the minority of homes where that isn’t the case, it is completely abhorrent to take the view that families have ‘got what they deserved’ and if the care isn’t good enough that they should ‘do it themselves’.

Social care has, for a long time, been part of the fabric of UK society, and rather than trying to reverse that model we should be embracing ways to use it as creatively as possible. Ensuring that everyone has access to good quality care, be that short-term respite or long-term care, is vital for a healthy and vibrant society. When care is caring and compassionate, it can be a breath of fresh air into the lives of all that it touches.

I also believe that we need to stop looking at care as ‘them’ and ‘us’. Care, in all settings, should be about professionals and families working together, sharing knowledge and experiences. With an ever-increasing ageing population, my view is that this will need to become the norm if everyone - be they a person needing care, a family or a social care professional - is to cope with this new reality.

Until next time...

You can follow me on Twitter: @bethyb1886

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Diagnosis – The day and the aftermath

Given that dementia is one of the most feared, if indeed not THE most feared disease in the UK and beyond, you could probably turn the moment of diagnosis (worldwide a new diagnosis of dementia is made every four seconds) into the basis of a horror story.

It is truly the news that no one wants to hear, and however much it can help to explain that which seemed unexplainable, it is for any individual and their family a life-changing moment. You may well feel angry, numb or very emotional. There may be tears, or it may be all about trying to maintain a stiff upper lip. In the hours, days, weeks and months ahead there will be questions, so many questions, and potentially a scarcity of answers. Of course some questions are unanswerable, the most notable being “Why me, why us?”

Then there will be the decisions, which you may be advised not to rush, and yet may feel you want to get out of the way just so that you don’t have to continually mull them over in your mind. How are you going to break the news to your family and friends? Do you even want to tell them? What about advanced care planning? Can you face making plans for a time when your dementia will be advanced and you aren’t able to participate in planning in the way that you can at the moment? Do you have a will and a Lasting Power of Attorney in place?

Add into that potential areas of conflict with your partner or those closest to you. Maybe they want to tell people about your dementia but you don’t want anyone to know. Maybe you don’t want to call what you’ve been diagnosed with ‘dementia’ through fear of stigma, but your partner does. Maybe your family want to access help and support services that you don’t feel ready to be a part of yet.

If coping with all of this wasn’t enough, crushing moments when you cannot hide from the truth can crop up unexpectedly and with alarming regularity. Handing in your driver’s licence. Visiting your GP. Having your ‘behaviour’ explained by your partner to people who have no idea about dementia, or a very stigmatised view. The sympathy that flows when people hear about your diagnosis – sympathy that you know is well-intentioned but makes you feel even more like a patient. Or the fact that friends and family stop talking to you and only talk to your partner. Even small things, like applying for travel insurance, can remind you of your diagnosed status.

Inside your head you may be thinking that you’ve let everyone down. You may feel as though you’ve been robbed of your future and the plans you had to enjoy your life. You may dread the thought of needing care, or of having to watch your partner caring for you. You may be wondering where you will live and how you will afford to pay your bills. Indeed, may just want to scream, cry and kick something (not the cat!).

For people who’ve been diagnosed with young-onset or early-onset dementia (dementia in someone under 65) there are often additional considerations. You may have to decide how to tell your employer. You may be facing losing your job and potentially not being able to pay your mortgage, and likewise for your partner if you need them to help care for you. You may still have dependent children who are relying on you, or ageing parents who need you to be caring for them in their mature years.

In short, a diagnosis of dementia has a ripple effect throughout every aspect of life that affects not just the person with dementia but everyone who knows and loves them. For most people, that life-changing moment of diagnosis will come during an appointment with a consultant specialising in dementia (an old-age psychiatrist), in potentially a very clinical setting, often with little offered in the way of help and support largely because the clinician hasn’t been given resources to signpost you to.

It may come after many months of waiting following your initial consultation with your GP, and will usually be as a result of extensive tests at your local Memory Clinic. It may not be a shock, or it may be the biggest shock you’ve ever had, but it’s important to remember that whilst so many aspects of your life may be set to change over time, fundamentally you walk out of that consultation room the same person who walked in.

A diagnosis should never mean that you go from being a vibrant, hopeful person to someone who cannot see a way out of the fog. Everything that you could do before you walked into that room you can still do when you come out of it, and if you are to live well with dementia you need to keep on doing as much as you possibly can for as long as you possibly can. It’s easy to get blogged down in the really tough stuff, most notably wondering how you may decline in the future, but if any disease should make you want to live for the moment, it’s dementia.

My dad astounded many a medic by living for 19 years with dementia, and having quality of life very late on. Back when my dad was diagnosed we didn’t have Memory Clinics, and due to the haphazard nature of how dad’s dementia was supported (or rather not supported) during the first ten years of his life with the disease, dad’s diagnosis came while he was an inpatient in the local hospital, with his ‘team’ diagnosing and us as his family simply being informed that he had been moved to an Elderly Mentally Infirm (EMI) Unit. When we asked why he had being moved, we were bluntly told, “He has dementia.” Only after demanding to see one of the consultant psychiatrists in charge of the unit did we understand a little more, but I can honestly say that pretty much we just had to ‘learn on the job’ , and we were still learning nine years later when he passed away.

In many respects, that is the nature of dementia. A few people have a very rapid progression into the advanced stages of the disease, and indeed pass away quite quickly afterwards. For most people, however, the decline is far slower, enabling a huge amount of occupation and enjoyment in life that provides priceless memories. My hope is that as we improve awareness, understanding, care and support that everyone’s experiences of diagnosis and the aftermath will be less of a horror story and more of an inspiring story.

Until next time...

You can follow me on Twitter: @bethyb1886

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A good end-of-life

Given our aversion to talking about death and dying, the idea of a good end-of-life isn't something that has been widely debated. Yet for people who are diagnosed with a terminal disease, like dementia, knowing what would represent a good end to their life, when that time naturally comes, is pivotal to providing the care that they and their family deserve.

To me, there are two key points. Firstly, the natural element. One of the many issues that has arisen from the use of the controversial Liverpool Care Pathway (LCP) in the UK is the fact that many families believe that their loved ones were put on this pathway before they were ready to die. Prior to my father’s end-of-life, I had fretted for years about how we would know when his time was coming and what it would be like. Having now lived through that experience, I understand the crucial differences in a person’s condition that can provide a clear indication that they will soon pass away.

Given how often care professionals see people in the last stages of life, it seems extraordinary that anyone would misjudge this situation. Of course as we now know, the LCP has become tainted by suggestions that it was actually used to hasten death, free up beds and save money. Indeed, with hospitals having been given financial incentives to put patients onto the LCP, it is clear that the whole premise of trying to do good for patients at the end of their life has become lost in favour of very dubious motivation.

Having established that someone is naturally dying before implementing any specific end-of-life care practices, the second most important element is ensuring that their end-of-life care is exactly what all of their previous care should have been – person-centred, compassionate, dignified and respectful. One of the reasons I wrote so candidly about my father’s end-of-life was precisely because I felt that he had what I would describe as a good death. The manner in which he was cared for, and we were cared for as his family, is I believe an example to everyone.

Clearly we were fortunate in being able to find my dad a bed in a care home that were prepared to look after him for however long he had left. It is likely to be far more difficult, and potentially impossible, to provide the same experience in a hospital. Hospices are wonderful, but many are not prepared to admit people who have dementia due to concerns about how they would manage the disease.

In truth, these concerns are generally not as great as hospices might imagine. Someone who is living with dementia and nearing the end of their life is unlikely to be disruptive, aggressive or exhibiting other behaviours that they could find difficult to cope with (for example walking). Communication difficulties are likely to be severe, but I would expect hospices to have extensive experience in coping with these given that medications and the effects of all kinds of terminal diseases are going to affect communication for many of their patients.

As we all know, however, even if more hospices were prepared to admit people with dementia at the end of their life, there aren’t enough hospice beds to cope with demand. This then only leaves someone’s own home, a care home or a hospital as options. I’m sure that most people would want to be in their own home, but often primary care, out-of-hours care and palliative care services are not able to provide the help and support required. Having a family who can care for you is an advantage, but they will undoubtedly need some help from health and social care professionals within the community, and most experts in palliative care are already overstretched.

Our experience of care homes is that most did not want to take my dad when he was languishing in a hospital bed with extensive needs, so I count our blessings that one home took a very different view. For people who are approaching the end of their life and currently living in a care home, the experience can often be that the home become fearful of providing palliative care, and will therefore call an ambulance to take the person to A&E when severe pneumonia, UTI’s or other grave health problems set in.

In theory, care homes should be well placed to provide end-of-life care in an environment that is far more homely than a hospital. To do this, however, requires liaison with other health professionals (GP’s, specialist palliative care nurses etc), on-going, honest and transparent discussions with families, and agreement from all parties on a way forward. I believe that this is achievable (my dad's end-of-life care being an excellent example), but it would require specific training across the board to empower the professionals charged with providing this care, and much greater understanding and knowledge on the part of families. The Gold Standards Framework is an excellent starting point, but it isn’t mandatory for care providers.

I am certain that most people living with dementia, and their families, would not want to be in a situation where the person with dementia is taking their last breaths on a trolley in a busy A&E department, just because our health and social care services cannot respond to their end -of-life care needs more compassionately and appropriately. Likewise a busy hospital ward, as a result of being an inpatient for far longer than necessary and picking up numerous hospital-acquired infections along the way, is also not a good model of end-of-life care.

I think that the principles behind giving people a dignified death without painful interventions and excessive and aggressive treatments is in essence to be applauded. In the end that is exactly what my dad had and I can say that it was a peaceful and loving end for him. Clearly, however, what has happened with the usage of the LCP has often gone against all of these objectives, largely due to failure of implementation and the utterly inappropriate use of incentives to put people onto it.

Dementia is a progressive and terminal disease, and as such, ensuring people who are living with it can have a good end-of-life when that time comes is vital. As a society we need to start having honest, open discussions about what a good end-of-life really means and how that is achieved. We need to encourage and facilitate more widespread advance care planning, and ensure that health and social care is able to support people to have what they have said they want at the end of their life. For those without advance care planning in place, we need to ensure that their end-of-life care is as individual to them as possible, reflecting everything we know about them and any expressions of wishes.

We need to look at the alternatives to dying in hospital and how we fund those to ensure that no one is left worrying about monetary issues at such a sensitive time. And finally, for people who will inevitably die in hospital, we need to find a successor to the LCP that puts patients and their families at the heart of that end-of-life process to ensure that a good end-of-life is a reality for all. We will have succeeded when taking care of the dying is seen as a privilege for the living.

Until next time...

You can follow me on Twitter: @bethyb1886

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