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

LIKE D4Dementia on Facebook

Paid to care

When you go into any care setting, either as someone needing care or their family, you naturally expect that everyone who is looking after you or your loved one has been given all the skills that they need to provide that care safely, compassionately and confidently. What you might not realise is that aside from those people who you automatically recognise as being professionally trained and accredited (doctors, nurses, occupational therapists, physiotherapists, radiographers etc), those who assist them in providing care aren’t afforded the same professional status.

Although standards have been laid down by the Skills Councils for Health and Social Care, there is no robust system for ensuring that these are met, leaving the training and development of Healthcare Assistants (HCA’s) in hospitals and carers in social care settings (care homes, domiciliary care etc) very much open to interpretation and varying levels of implementation. In addition there is currently no defined path of career progression for those who seek it, and no professional body that offers registration for this huge number of care workers (unlike the RCN for Nurses or the BMA for doctors).

During my father’s time as a hospital inpatient, I would say that the majority of his care was provided by HCA’s. They were the ones charged with checking his vital signs, turning him to prevent pressure sores, changing his incontinence pads, and helping him to wash, eat and drink. Nurses were always on the ward, but clearly not enough of them for the number of high dependency patients, let alone with sufficient time to support their HCA colleagues.

Indeed, such were the tasks undertaken by HCA’s that many visiting relatives actually believed that they were part of the nursing staff. Yet HCA’s, despite the vital work that they do, clearly aren’t valued by our healthcare system. Without the professional standing of their nursing colleagues, HCA’s are effectively a cheap labour source for employers. Many are working on grossly over-stretched hospital wards leading to their duties creeping ever more into the realms of full-blown nursing. In monetary terms it costs far more to employ additional nurses than it does to ask HCA’s to complete some nursing tasks, but this is a dangerous game to play with patient’s health and wellbeing.

The situation is no better in social care, with carers in care homes and domiciliary care again providing vital support to often highly dependent vulnerable people under huge pressure, often inadequately trained or supervised and feeling very undervalued. Whilst some care providers constantly update and evaluate the skills of their workforce, others provide much less effective training for their staff, putting those who are receiving care at huge risk. Training doesn’t need to be complex, degree-style education (see this blog post), it just needs to be logical, natural and above all effective.

How this situation has gone on for so long is a mystery to me. We regulate health and social care services and demand high quality care, and yet that isn’t followed through with a framework that invests in and supports the very frontline staff who are charged with delivering this. I’m not suggesting that training and qualifications are the answer to all of our problems in care, far from it. On many occasions I had to educate both nurses and HCA’s on how to care for my father in aspects such as his swallowing problems, communication difficulties or behavioural issues. I do, however, feel that as patients and relatives we want to know that care provision is considered sufficiently important that it warrants a professional standing within our society, with the relevant standards and rewards in place, adhered to and monitored.

Currently, many HCA’s and carers working in social care earn less per hour than you might get as a cleaner or refuse collector. Whilst the latter two examples are important jobs, surely being in a position where you could potentially influence whether someone suffers pain, harm or ultimately lives or dies as a result of the care you provide is somewhat more important. I also believe that the role of HCA’s and carers in social care settings is one that their more qualified colleagues would also want to carry greater recognition and professional standing.

Nurses and doctors on busy hospital wards would be the first to admit that they would be lost without HCA’s. An effective care team cannot function without people who provide the basic care that is so vital to a patient’s recovery and comfort. Indeed, I would argue that the role of HCA’s goes beyond just providing care, but also moves into the realms of social interaction with patients, and provides vital opportunities to learn more about a patient or to spot changes that could indicate a problem or decline.

Looking at the role of HCA’s in that light, you suddenly realise just how important they are in a care team. So why don’t we train them to a higher, universal standard, give them professional recognition and pay them more money? The simple answer is because it’s cheaper not to. But does it represent good care, or indeed the model of care we want for ourselves or our loved ones? No.

In my opinion, for far too long those who provide frontline care have been marginalised, undervalued and seen as the workhorse of public and private sector health and social care. There has never been a more important time to change this situation if we are truly serious about delivering high quality care across all sectors. I believe most HCA’s and carers in social care would want this, their colleagues would support such a move, and most importantly of all patients and families would know that those looking after them at some of the most difficult and sensitive moments in their life are recognised and valued professionals within our society.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Keep the faith

One of the first things to become bypassed in someone’s life as their dementia progresses and they become more reliant on social care can be their faith, beliefs or spirituality. This is often as a result of professionals caring for them feeling very uncomfortable about anything religious or spiritual and dismissing it, actions that echo the words of a famous adviser to a former UK Prime Minister who once said, “We don’t do God”.

It is, however, vital to recognise that many people actively want to ‘do God’ or indeed follow any other religion or belief structure, and it is absolutely their right to do so. This is particularly true when someone’s health deteriorates, or they have been diagnosed with a terminal illness. In those times many people draw strength from their faith, and no one should deny them that or say that they cannot, least of all those who are charged with their care.

Whilst you can exercise your right to follow your chosen path of belief or spirituality in almost every situation life can throw at you, living with dementia has a tendency to gradually remove that autonomy. If you actively practice a faith, you will then potentially need support to fulfil that calling in your life, and understanding from those around you who may come from different backgrounds and cultures.

I have seen both the positive and negative approaches to supporting someone who is living with dementia within the context of their religious beliefs. The positives were largely in relation to my father, who received regular pastoral support, particularly during the last few years of his life and during his end-of-life. This was largely due to good fortune, however, as another relative in his care home happened to be a practicing clergyman who visited his mother daily, and was happy to provide pastoral support in his professional capacity to anyone else in the home. There were also monthly services that residents could attend, and the hymn singing was always a particular favourite with dad.

Sadly a Muslim lady had a far more negative experience when she moved into the home. Despite requiring a strict Halal diet, some carers were caught feeding this lady non-Halal meat. When these carers were questioned about the food, they said that this lady’s dementia was so severe she wouldn’t know what she was being given, and had been willing to eat it so it made no difference. Moreover, with the exception of one carer who was from the same cultural background as this lady, no others were able to correctly assist her to dress in a manner befitting her cultural and religious heritage.

Clearly the experiences this lady had did not represent good care, but they do perhaps give an insight into how easy it is considered to be to bypass that vital role of supporting someone to maintain their religious and cultural beliefs. Often a person with dementia cannot fight back against this, demand better or indeed remove themselves from what has to be considered a form of abuse, hence why we need a far greater emphasis on these elements of care.

Advocacy can help, as I discussed here, but fundamentally we need to ensure that care in the UK exists within the context of being person-centred, and doesn’t take the ‘easy’ route of ignoring someone’s faith or beliefs. Exploring the whole person means looking not just at the physical things like possessions and tangible choices that are often much easier to acknowledge, but also accounting for the things that don’t exist in a physical form and represent the spiritual.

For anyone who has a faith or belief structure, that spiritual side of their life is often far more important than the physical things that they are surrounded with. Yes a cross, beads, items of clothing or symbols associated with particular customs or festivals can bring incredible comfort, familiarity, joy and peace, and hymns, songs, chants and readings can provide fantastic therapy, but it will often be about the unspoken or otherwise untouchable things that their faith brings them that lie at the heart of their life.

Care plans include the opportunity to describe someone’s religion, but as we all know these are documents that are largely completed purely for regulatory purposes. To be blunt, questions about my dad’s religious beliefs were directly linked to the questions about the sort of funeral he would want when the time came. For the most part, the pastoral care that my dad had was due to the arrangements we made as a family, which begs the question, what happens to everyone else?

Routinely ignoring the spiritual needs of people with dementia is never going to represent good care. Where someone has a faith that they have previously actively pursued and wish to continue with, they must be supported to do that whether they are living in their own home and relying on regular visits from a faith leader or support to attend an act of worship, or are living in a care home, whose remit as a caring community should always include opportunities for regular worship and one-to-one pastoral care. Without these structures, there is a danger that the only spiritual support someone with dementia experiences will come from a hospital chaplain at a point of severe crisis, if indeed they have any support at all.

Engaging faith leaders in increasing their knowledge and understanding of dementia is an important step to ensuring that everyone who needs their support has it, but without social care embracing this key aspect of many people’s lives appropriate pastoral care for all will still be a long way off. Care is not about our own personal views; it’s about walking into someone else’s world and embracing everything about them, be it seen or unseen, and ensuring that all who want to have the opportunity to keep their faith alive can do so.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

A sense of achievement

One of the most pervasive beliefs about dementia is that people living with it cannot achieve anything. For many the onset of living with dementia can signal the end of aspects of their life that represent the very foundations of their existence, and the consequences of that can have a very negative effect on their health and wellbeing.

If you are a younger person who is still in active employment it can mean the end of that way of life, regardless of whether you wish to continue working in some capacity or not. For someone like my father, diagnosed much later in life after a crisis point, it can mean the end of living independently and an unavoidable move into a care home.

In both scenarios, loss of independence, purpose and the chance to achieve something every day can be devastating. If someone is able to remain involved in engaging, stimulating and worthwhile work, it can have a very positive therapeutic effect that will help to alleviate their dementia symptoms . The minute someone feels condemned to being no longer useful, and potentially just sits in front of a television all day, hardly moving, not needing to process information or problem solve, more rapid and extensive brain deterioration is highly likely. Daytime TV isn’t considered to be mind-numbing for no reason!

Likewise, being forced through your current symptoms to move into a care home, leaving behind the familiarity of your own home, your comforts and most of your possessions can again often bring about a significant deterioration. In my father’s case, his care home never offered him the chance to do meaningful and worthwhile tasks that could have improved his experience of care in those early years. Even something as simple as gardening could have made a world of difference to his quality of life and sense of achievement.

You could argue that an element of personal responsibility comes into play when looking at your own quality of life, but in the case of someone with dementia, the way in which the disease robs a person of that previously assumed ability to control their life complicates issues of personal responsibility immensely. In an ideal world we motivate ourselves and seek out opportunities, but that is often easier said than done when living with dementia means that doors are slammed in your face.

Unlike the support given to many disabled people, people with dementia do not routinely get offered help to enable them to remain in active employment for longer, or in some cases, even remain in their own home for longer. Yet we know that people with dementia do still want to achieve in everyday life, and most would much rather live in their own home than in a communal establishment.

Retaining independence is something most people guard fiercely. More often than not in the earlier stages of the disease, it isn’t the dementia itself that will rob someone of that independence, it is often the attitudes of society and the care and support systems we have (or don’t have!) that manage to do that.

For example, if employment becomes too problematic, or indeed someone is already retired, access to voluntary work can become a lifeline. For however long someone is able to do something, even if their support needs increase, they should be enabled to do that. Assistive technology, support workers or mentoring, memory triggers, flexibility and careful planning of each day can all help in supporting someone with dementia to continue to achieve and contribute to society.

Many of the things needed to enable someone to remain actively engaged in some form of work can also help to keep them living in their own home for longer too. Again the key here is support. Holistic family support is vital where a family are the main care providers, and where someone lives alone, a support package that focuses on keeping them as independent and safe as possible must be active and constantly reviewed.

It can be a very difficult juggling act, not least because much of the support that people with dementia and their families need relies on health and social care working together, which as we all know isn’t the norm. Often people find themselves at a crisis point, whereby either a carer can no longer cope or the person needing care has deteriorated to a point where they are admitted to hospital. If they cannot return to their own home for whatever reason, it is then vital that they have the chance to move into a care home that will support them as much as possible in a partnership of doing things WITH them, not just FOR them.

I want care providers to embrace seeing the people who come to live within their community as participants in the daily running of that community, not just as someone there to receive a service. What achievement means in practical terms for each resident in a care home can vary immensely, but here are some classic examples:

• Allowing a previously dedicated housewife to become actively involved in household tasks like folding washing, dusting or polishing cutlery.
• Helping an avid cook to make simple meals.
• Assisting the perfect hostess to serve tea and cakes to her guests or fellow residents.
• Providing a gardener with a piece of land, tools and plants to grow favourite food or flowers.
• Offering a retired secretary the chance to help with stuffing mailshots into envelopes or putting stamps onto letters.
• Helping a retired postman to distribute the mail around the home.
• Giving an animal lover pet grooming tasks.
• Offering a music or drama performer the chance to entertain everyone.

The list is endless and of course specific to an individual’s background and hobbies, but the point is that all of these tasks can give a person a sense of achievement. We must never lose sight of the need we all have to feel  that we have achieved something, and in the case of someone who is living with dementia, be mindful that achievement is a key component of living well with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Advocacy and dementia – A vital partnership

Dementia poses many challenges for those living with it or those caring for someone with it, not least getting their voice heard. Our wishes, views, needs and preferences are fundamental to our lives, but dementia can begin to erode our ability to articulate those clearly, and as the disease progresses, make it impossible to maintain a clear say in the decisions that govern our lives without some form of assistance.

For many people, this will involve their family stepping in. This was certainly true in my father’s case; we spoke up for him and his interests every day during his years of living with dementia. But what if your family are not willing or able to stand up for you, disagree with your vision for your future, or indeed you don’t have someone close to you who you trust to articulate what you are struggling to? Equally what if you are caring for someone with dementia and simply not being heard by the professionals who are taking decisions that directly impact upon you?

This is when advocacy comes into its own. An advocate is there to provide that voice for you. They are not there to offer their own opinions or second guess yours. Their role is to form a professional relationship with their client, and through that gain an understanding of what that person wants from the care they receive and the decisions that influence their life. Having done that, they are then tasked with imparting those views to ensure that every aspect of that person’s life and care has their needs and wishes at its heart.

People with dementia and their carers are at huge risk of marginalisation, leading to information being withheld, dignity and respect being eroded, decisions being taken for them and without their knowledge or consent, discrimination, inequality, difficulty in accessing health and social care services, loss of independence and opportunities for personal growth, and a general withdrawal from participation in all aspects of their life.

For a long time it was believed that people with dementia were stupid or in need of having their lives controlled. With the Mental Capacity Act and the Deprivation of Liberty Safeguards came a complete change of emphasis, with the prevailing view now being that everyone has capacity until it is proven otherwise.

This has given rise to far greater reliance on advocacy services, simply because we have finally acknowledged that people with dementia must have a voice, and if it can’t come from their lips then they have every right for it to come from someone else’s. Just how do you become an effective advocate for a person with dementia though?

Ideally advocacy is a service best sought in the early stages of someone’s dementia. If the person has had a diagnosis and is prepared to face up to the reality of having a progressive and terminal disease, then they can seek to make plans for their future. This would include considering who will speak up for them when they are no longer able to articulate their wishes as they would like to, and ensuring that if that person is to also be their carer, that they are properly supported in their role. Of course in reality, advocacy is often brought into someone’s life far later, and as a result a very skilled advocate is needed to ensure a correct representation of views that may be very difficult to ascertain by this stage.

The nature of dementia doesn’t make advocacy easy. The disease doesn’t have a rule book, presenting itself differently with each individual, and the fluctuating nature of symptoms can pose significant challenges. One day someone can appear far more lucid than the next, their opinions, views, behaviours and memory can change daily, as can their ability to make decisions, and obtaining consent for support may need to become a constant requirement.

Gaining an insight into how someone with dementia expresses themselves, and judging their level of understanding takes time and patience. Looking at someone’s history and any previous expressions of wishes are also key factors in navigating such a minefield. How much capacity they have on any given day can ebb and flow, and good communication skills are vital to ensure that an advocate is as effective and true as they can possibly be as the voice of someone with dementia.

Being an advocate is a role of huge responsibility, but also huge privilege. Giving a voice to someone who is losing theirs through dementia is a highly rewarding job, but also an increasingly vital one. With more people than ever before living with dementia, and having known people in my dad’s care home whose next of kin was a social worker or a solicitor, I have a huge appreciation for the need to ensure that everyone, no matter what their background, can get their voice heard. To put it simply, in good dementia care advocacy should come as standard.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

The voices of experience

From left to right: Ming Ho, Sally-Ann Marciano, Professor Alistair Burns and Beth Britton (author, D4Dementia)

I recently attended a high-profile meeting in London to discuss the ‘Timely Diagnosis of Dementia’. The attendees came from a wide variety of health and social care backgrounds, from those currently practicing medicine in various different settings, to academics and experts. The interests of business and the charity sector were also represented making it, effectively, a collection of the great and the good of professionals involved in dementia care.

Amongst the audience were a handful of people with personal experience of dementia, myself included, who spoke briefly, while two people gave presentations about how dementia had affected their life and their family. One was a man currently living with dementia, the other was a lady who had cared for her mother with dementia. At the end of the proceedings, one of the key organisers of the meeting expressed his view that out of everything he had heard that day, the stories of those with personal experience of dementia had been the most revealing and left the greatest impression.

For me, those comments summed up how I believe health and social care, particularly but not exclusively in relation to dementia, must evolve. I wrote many months ago about the need to put people with dementia and their carers at the heart of all policy and decision making, and I wholeheartedly stand by that. Far more robust, workable, positive and cost-effective policy can be made if only the people who are, or have, lived through dementia take the lead.

My personal words to the meeting briefly recounted my father’s experiences, and those of us as his family, not just in relation to his diagnosis but throughout his life with dementia. I also made three direct pleas:

1)      For professionals to listen to people living with dementia and carers past and present.

2)      For policy-makers and implementers to formulate a holistic approach to dementia care.

3)      For professionals from whatever background to leave issues relating to partisan interests in their particular area of health or social care to one side, and put themselves into the shoes of someone who is living with dementia and their family/carer(s).

More progress is needed to improve dementia care, but in my opinion so much of that is being hampered by personal ambition and tunnel vision. Many professionals, however well meaning, can easily become very focused on how policy can personally affect their working life, without seeing the wider picture. Equally, others who have already opened their minds to the possibility of learning from the people that they see as patients or clients, have proved that it can be done and work so this is not an unachievable aim.

The picture with dementia is a vast one – not restricted solely to diagnosis or any other single element. During the group discussion on my table, a huge amount of focus was given to apportioning blame, passing the buck, and accusing colleagues from other areas of the health or social care system of failing people with dementia and their carers. In my view, all of this is vastly unhelpful in achieving an outcome that benefits the people who need support the most and yet often don’t have a say in the policies that affect them.

The three words I settled on to sum up my view were simply ‘Holistic approach needed’. A holistic approach to dementia from everyone involved in healthcare, be that in primary care, secondary care, academia, research or within the wider community - meaning in practice that everyone constructively works together. A holistic approach that joins up health and social care, so that people with dementia and their families have real and lasting support. A holistic approach that considers each individual with dementia, and every need that they have, not just in relation to their dementia but in relation to every other aspect of their life, including other medical conditions. And a holistic approach that considers the family, friends and network of someone with dementia, and how they are affected by having a loved one living with the disease.

Needless to say, my three words were not adopted by my group. Yet when I spoke openly to the room later on, they received support from other colleagues – a positive sign for the future I hope. In my view something has to give, not just regarding the diagnosis of dementia which is obviously a key issue in dementia care at the moment, but also in relation to the many and reoccurring problems that come from living with dementia. The lack of support, information and understanding. The need to defeat stigma. The need to listen to carers and respond in a timely, co-ordinated and helpful way. The need to remove financial barriers to accessing the care and therapies that enable people to live well with dementia. And last, but by no means least, the need to provide the sort of outstanding end-of-life care that everyone with dementia deserves.

I want to make a huge difference through my work, and I will continue to tirelessly represent the people who are walking, or have walked, the path that I once walked with my father. In my view our contribution is what will transform the dementia landscape in the UK and further afield, improving it for professionals and families alike. There is, and will never be, a substitute for the voices of experience.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

An urgent need to understand

There are a few ‘taboo’ subjects in dementia care. Taboo because we find them embarrassing, too personal or just uncomfortable to even consider. Continence is one of them.

Dementia isn’t a disease that respects the delicate workings of the bladder and bowel. Those vital signals that the brain needs to allow us to relieve ourselves comfortably and in privacy are often lost as dementia progresses. The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years. In his case it came about as a result of a crisis point in his dementia, when he had a large stroke and ended up in hospital (as I wrote about here).

He struggled to remain continent in the busy, unfamiliar hospital environment, and once he was moved into a residential care home he was largely doubly incontinent. Sometimes he was able to get to the toilet in time, or use a bottle, but more often than not he needed a pad. Not that dad himself understood the need for the pad, and he continuously removed it, leading to numerous accidents and changes of clothing.

By the time he was moved into nursing care, and then lost his ability to walk, he was fully incontinent and relying totally on pads. Key factors during those later years were spotting when his pad needed changing, ensuring it was done promptly, that he was thoroughly cleaned and dried, and then a new pad being available. Extraordinarily, at one point a directive was issued to the care home by the local health authority saying that they would only be supplied with a limited number of pads, leaving each resident with an allocation of 3 pads per 24 hours.

We fought against this rationing, eventually getting it overturned. In my view it is a basic human right to be kept clean and dry. It goes against every notion of dignity to restrict how many pads a person can have. If a baby was left in a dirty nappy, that would be considered child abuse. The same principles must apply to the care of adults.

Being left in wet or soiled pads increases the risk of UTI’s and other infections, pressure sores and associated skin problems, all of which are awful for the person affected. Moreover, as a money saving exercise rationing pads is entirely counterproductive, since the treatments needed to combat the effects are likely to cost far more. In someone with dementia, the discomfort of sitting in a soiled pad could also encourage them to put their hand into their pad, potentially getting faeces on their hands and spreading germs.

Accurately assessing someone for incontinence products is difficult since the very nature of incontinence is that it is unpredictable, and dependent on factors such as food and drink intake, the side-effects of medications, and unexpected issues like tummy bugs. Imagine an outbreak of diarrhoea and vomiting in a care home where most residents are immobile and incontinence pads have been restricted. We cannot condemn staff for providing poor care if they are not given the basic materials needed to provide good care.

That said, incontinence care isn’t just about having enough pads, how those pads are used is also vital. If care staff develop poor practices, like leaving someone in wet or soiled pads, or not cleaning and drying the person properly when they change a pad, all the supplies of pads in the world won’t help. Likewise, double padding, where two absorbent products are placed on top of each other, is another example of poor care. This is often done as a short-cut to avoid having to do a full-blow change every time a pad is soiled, but it is extremely bad practice since it is very uncomfortable for the person wearing them, will increase the risk of pressure sores, heat rashes and skin problems, and means that two products are likely to be contaminated.

Of course ideally you want to prevent incontinence to begin with, and I feel that in relation to my father he was rather written off in this regard. There is a prevailing attitude that incontinence is a natural part of dementia, but we need a far greater emphasis on helping people to remain continent for as long as possible.

So how do you help someone with dementia to remain continent? Mobility is vital. They need help to maintain their independence, using mobility aids if necessary, and these need to be readily available and able to fit inside the toilet cubical. Environmental factors are also extremely important. Is the route to the toilet clearly marked and free of obstacles? Is the signage clear (the word ‘toilet’ and a picture of a toilet, rather than male and female signs). Once inside the toilet cubical, is it clear where the toilet actually is (colour contrast rails and seat)? See the work of Stirling University for more tips on designing dementia friendly environments http://dementia.stir.ac.uk/virtualhome.

The other key issue in helping people to remain continent is to have assistance readily available. Having someone to help you to the toilet, or bring you a commode, may be all a person needs to remain continent. Like so many aspects of dementia care, time, patience, continuity of care and good communication are vital in promoting continence.

Once you get to know someone you may be able to anticipate when they need to go to the loo by picking up on key signs like restlessness, and can gently offer some support to get there. They may also feel more able to talk or motion about needing the toilet if they have continuity of care. Being able to estimate the urgency of a person's need for the toilet is a key skill, as is not becoming fatigued by someone with dementia repeatedly asking for the toilet, even when they have just been, which should never be seen as a deliberate attempt to mislead those charged with their care.

Someone with dementia can easily become confused about needing the toilet. They may forget they have been, may genuinely need to go again, or feel anxious about getting there in time, even if they don’t presently feel the need to go. Persistently asking for the toilet, and then not doing anything once there, can also result from being bored or needing human contact, hence why it is important to offer someone with dementia meaningful activity to keep them engaged and promote a good quality of life.

People with dementia can easily lose continence if they aren’t supported. They may even know that they need the toilet, but aren’t able to facilitate that due to their dementia and a lack of support. Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook