Wednesday 26 June 2013

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...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 19 June 2013

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...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 12 June 2013

The voices of experience

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

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 5 June 2013

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

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...

Beth x

You can follow me on Twitter: @bethyb1886