Without a song or dance, what are we?

One of the first blogs I ever wrote on D4Dementia, back in May 2012, was about music for people with dementia. It charted my dad’s love of music, how it became a vital communication tool in the latter years of dad’s dementia, and how I’d been so inspired by the effect music had on my dad that I trained to become a professional singer and completed 35 gigs in care homes.

I guess back when I was doing those gigs, I was effectively part of what a recently launched report on dementia and music calls “a multitude of different individuals and organisations” delivering live music in care homes. The patchwork picture painted by that phrase is very apt given the findings of the aforementioned report - from the Commission on Dementia and Music set up by the International Longevity Centre and supported by The Utley Foundation - that music for people with dementia is, “Defined by sporadic provision which is currently delivered only to the few.”

But why does that matter? Evidence has emerged over the last few years that shows a multitude of benefits associated with music for people with dementia, including:

• A positive effect on the brain by potentially helping with the recall of information
• Minimising distressing symptoms
• Tacking anxiety and depression
• Retaining speech and language
• Enhancing quality of life (through social interaction, improved wellbeing and decreased stress hormones)
• Having a positive impact on the person’s relatives, friends and care workers when they join the person in music-based activity
• Minimising anxiety and discomfort in end-of-life care

I recognise so many of these benefits from my personal experiences. Music gave my dad so much joy, satisfaction and pride. He would sing his favourite songs from beginning to end, word perfect and with precise rhythm and timing. Most tellingly of all, as I recounted in my 2014 Huffington Post blog 'The Power of Music Therapy', when dad could no longer hold a conversation, he could still sing a song.

For us as a family, singing dad’s favourite songs with him or humming or tapping out a treasured melody gave us a priceless connection with him. It was something we could all join in with (once I’d printed lyric sheets for those of us less well-versed with the songs!), smiling, laughing and sometimes shedding a tear together so bound up were we with the emotions of the music.

Indeed, it was the amazing effect music had on my dad during his years with dementia that contributed to the inspiration I had to begin D4Dementia. I wanted to share some of the positive aspects of my dad’s life, and music is right up there on the positive list. In the nearly 6 years since my dad died, I’ve urged everyone I’ve met who’s involved in dementia care and support to give music a try, and it has undoubtedly become easier to do that.

Initiatives like Playlist for Life have come to the fore, and with internet access improving yearly, being able to utilise digital music archives, watch music performances on YouTube, or obtain lyrics to support communal singing of favourite songs has made music more accessible than ever before.

It is extremely sad then that the Commission on Dementia and Music concluded that:

"Educated estimates suggest that high quality arts and music provision may currently only be available in just 5% of care homes." And, "There may be as many as 320,000 people with dementia in residential settings who do not have access to meaningful arts provision."

There is SO much more that needs to be done to support people who are newly diagnosed with dementia, all the way through to people being supported in end-of-life care, to access the musical intervention that is right for them. It could be anything from informally listening to CD’s or the radio, to playing an instrument, formalised music therapy sessions, live music performances designed for people with dementia, or groups like Alzheimer's Society's 'Singing for the Brain'. 

The report gives a list of recommendations which provide all of us with a focus for raising awareness of the benefits of music for people with dementia, or becoming actively involved in its provision. Indeed, friend and fellow writer, Pippa Kelly, has already blogged about a fantastic idea from soprano Lesley Garrett for the BBC to reintroduce ‘Singing Together’, a programme that once brought young people together around their radios and could now do the same for older people.

I for one wholeheartedly support this idea and hope it is just the start of many more innovative musical initiatives, simply because, as the report says:

“A life without music is unimaginable for many and yet for some people with dementia, opportunities to access music can be few and far between.”

Let’s all be part of changing this current reality so that no one who could benefit from a song or dance in their life is left without it.

Until next time...

You can follow me on Twitter: @bethyb1886
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Doll therapy - Disrespectful or comforting?

One of the most controversial non-drug therapies for people with dementia is doll therapy.

Before the work I do now, I knew this not as a 'therapy' but as the lady in my dad's care home who occupied the room opposite him having dolls she would cradle, talk to, dress, put to bed and at times cuddle as if her life depended upon it. To a lesser extent my dad also found comfort within the principles of this therapy - not with dolls but with life-like soft toy farmyard animals that he would stroke and cuddle.

Back then I thought nothing of the ethical arguments around introducing items most closely associated with childhood into the world of people at the other end of life's spectrum. All I knew was that my dad had extremely restless hands that needed something to hold onto, and he seemed to draw a lot of comfort from stroking these animals and looking at them.

Likewise the lady in the room opposite had her dolls brought in by her daughter who would talk to her about them, and leave her to hold them and 'care' for them when it was time for the daughter to go home. From what I observed, the lady found a great deal of pleasure in these dolls, and seemed to have a far more creative interaction with them than she did with the daytime TV programmes that would often blare out from the corner of her room.

Looking at the use of these dolls and toys now with my more objective hat on poses an interesting dilemma for me. In my work I am a staunch advocate of ensuring that we never infantilise people with dementia. A dementia diagnosis doesn't mean you stop being an adult. Everything about dementia care should be dignified and respectful, and never treat people in any way whatsoever that belittles or demeans them.

On the flip side, do I really have any right to deprive someone who is living with dementia from finding comfort, enjoyment or familiarity from participating, of their own volition, in doll therapy? I saw first-hand how my dad's soft toys benefited him - they were our idea as a family, we bought them, we gave them to him, and we facilitated his use of them (at the time dad had these soft toys he was immobile, so he couldn't walk across the room to pick them up himself). He didn't ask for them, but he actively participated in handling them.

I didn't see his affiliation with these items as something that made him less of an adult, but arguably someone walking into his room seeing a grown man in a chair with a soft toy lamb on his lap might have thought very differently, and then treated dad as less of an adult as a result. Whilst I wouldn't have wanted to be responsible for anything that stripped away dad's status as an adult, I would have done anything that gave him comfort and pleasure.

In essence, this sums ups the complexities of the arguments around doll therapy. Such arguments polarise opinions and leave people like me - who pride themselves on offering balanced views, thoughtful commentary and helpful advice - with a real dilemma. I've never openly advocated for the use of dolls in dementia care in the way that fans of this therapy have, but equally I could never go into a care home, see dolls being used and honestly object, provided it was clearly in the best interests of the person with the dolls and something they were participating in willingly.

That last point gets to the heart of the arguments around doll therapy. The willingness of the person with the dolls is, for me, the deciding factor. If the person with dementia really takes to a doll in the way that someone else might find comfort in any other object, then that is their choice. We may present items other than a doll in the hope that they might prove more appealing, but if the doll remains the item of choice then that must be respected.

The argument about infantilisation in relation to dolls has much merit, but I think infantilisation can be avoided if the attitudes of those around the person remain respectful and adult. For most people with dementia who find comfort in having a doll, the doll is merely the physical manifestation of the person's need to care for something, and for that something to be familiar.

We know that as dementia advances a person often retreats to memories of their early life, which may involve childhood or early adulthood, marriage and starting a family. In the present day, a doll could easily be a reminder of childhood or of starting a family. Dogs and cats could also remind a person of those landmark childhood and early adulthood years, but many care homes (not all) won’t allow animals to live within their homes unless they are of the soft toy variety.

If dolls, and indeed soft toys, are seen as props to facilitate reminiscence then they take on a different significance. The ability to reminisce is considered the mark of a life lived with all the memories and events along the way that come with adulthood. Reminiscence also draws on the wisdom and experience that is the landmark of ageing. Therefore in that context dolls could be the spark to unlock knowledge, for example about parenting, for some people.

Ultimately, whatever your views on doll therapy - and incidentally I remain largely on the fence -  I suspect that being judgmental does more harm than the therapy itself. Yes, it has the potential to be disrespectful. It also has the potential to be comforting. The key to unlocking both the value of this therapy and combatting the negatives associated with it seems to be more about how those supporting the person with dementia facilitate it and react to it.

Until next time...

You can follow me on Twitter: @bethyb1886

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Researching dementia

Last week statistics were released showing that during the last year 22,000 people took part in dementia research – a 60% rise - and that 10,000 people have signed up to Join Dementia Research.

Research isn’t a topic that I’ve written about extensively, which perhaps isn’t surprising given that I’m not a scientist or an academic. That doesn’t mean I have no interest in it, however. Aside from the very obvious personal feeling I have that I don’t want others to go through what my dad went through (particularly in the latter years of his dementia), I am an ambassador for dementia research charity BRACE, whose work I am constantly in awe of, and I write and speak extensively about the fact that, in reality, we actually know alarmingly little about dementia. 

This lack of knowledge has many causes, which include the historic lack of focus on dementia, the even greater lack of money put into dementia research in the past, and the sheer complexity that the many forms of dementia present to even the most scientific or academic brain. Studies have started and never produced results, and in terms of pharmaceuticals, drug trials have been abandoned due to unforeseen circumstances – for example drugs not producing the effects expected or unacceptable side-effects.

I have never been a person greatly influenced by the work of pharmaceuticals, although I do acknowledge that many people are supportive of the current (limited) drugs that are available and of course any new breakthroughs – like for example Eli Lilly’s Solanezumab drug announcement at the recent Alzheimer’s Association International Conference – are of course to be welcomed if indeed there is widespread benefit to be had for people with Alzheimer’s Disease in the future.

This is, however, such a tiny part of the overall picture. With so many different forms of dementia, and different nuances in how each person with a particular form of dementia experiences their symptoms, there is so much more that needs to be determined before we can honestly say that our understanding, and treatment for, the many different types of dementia has progressed to the point that we have reached for the many different types of cancer.

With that in mind, any increase in the numbers of research participants is extremely important, and I suspect is largely down to the profile dementia now has that it simply never had in the past. So what are the benefits of being involved in dementia research?

For people with dementia:

Many people I know who are living with dementia have actively sought to be involved in research. These individuals often describe involvement in research as an opportunity to feel useful, to be proactive after diagnosis and with the potential to make a difference to the lives of others now and in the future.

For families of people living with dementia:

Because a diagnosis of dementia impacts far and wide beyond the person with the diagnosis, many family members feel they want to do something that helps them to contribute to the wider understanding of dementia. Some people also view research as an opportunity broaden their own knowledge.

For society as a whole:

As dementia seeps into the public consciousness like never before, more individuals are learning about dementia and recognising that, as the numbers of people being diagnosed increases they, or someone they love, may also develop dementia in the future. To be able to help improve understanding and treatment is a powerful motivating factor.

So much of research really is about the future, and future-proofing health is often in the forefront of the minds of both researchers and participants, but I would sound a note of caution. While we think about improving health for the future, and ideally finding the treatments and potentially even cures for the different forms of dementia, we must never forget the people who are living with dementia NOW. 

Their needs are as important as our own need to avoid developing dementia in the future, and research into living well, lifestyle strategies, non-pharmacological therapies and care and support that focuses on improving quality of life is what is likely to benefit these individuals the most. I recall when my dad was alive, and particularly in the latter years of his dementia, the headlines about research ‘breakthroughs’ pretty much went over my head. They were utterly irrelevant for dad, who was my primary concern at that time, and although I don’t in any way dismiss genuine breakthroughs now, I have an equally strong sense that helping people in the  future doesn’t mean we neglect those living with dementia in the present.

Research for people living with dementia now, people living with dementia in the future, prevention of dementia and the many different aspects of treatment and care needs to be as broad as the participants signing up to participate in dementia research. That, for me, is the blueprint for a dementia research strategy that is befitting of the task ahead of us, and one that also does justice to the many people, like my dad, who have lived and died with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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Reablement for people with dementia

As we approach Easter, a time associated with rebirth, new life, possibility and opportunity, I have found myself thinking about how this correlates with the experience of living with dementia. Historically, a diagnosis of dementia has been seen as a death sentence to endure and suffer, but since that doesn’t tally with how I look back on the years I had with my dad during his dementia, I have become increasingly interested in the concept of reablement.

Reablement is generally associated with helping a person to regain the ability to look after themselves following an illness or injury. You are most likely to see services dedicated to reablement for people who are recovering from trauma (I distinctly remember the wonderfully holistic package of reablement given to my half-brother after he had a road traffic accident), or a stroke, and possibly even for people who are recovering from mental illness or addiction.

I would frame reablement as help to complete essential tasks of daily living, support to pursue hobbies and interests that are mentally and/or physically challenging, and opportunities to grow and develop. For my half-brother, I recall a residential reablement centre he went to after being discharged from hospital where he was supported to look after himself (cooking, laundry, personal care etc), return to participating in the things he enjoyed prior to his accident (hobbies and activities that were important to him), learn new skills, and plan for the future to help him prepare for living independently, getting out and about and returning to employment. He received physiotherapy, occupational therapy, counselling and there were wider family support services.

All of which begs the question, why aren’t the principles of reablement more closely associated with dementia? To put it bluntly, since dementia is a terminal disease, I suspect people with dementia are seen as being unlikely to benefit from a service that supports and encourages independence and autonomy, when traditionally dementia is associated with a degeneration into complete dependence and a loss of voice and identity.

Obviously I’m not questioning the terminal nature of dementia; my dad had vascular dementia on his death certificate. Nor am I suggesting that as dementia progresses a person doesn’t become more dependent -  I know from my dad’s experience that he became totally dependent on 24/7 care, hence why he was in a specialist dementia nursing home for over 8 years.

But behind all of this there are some key variables: 

1.      There is no set pathway for deterioration, everyone experiences this differently and in different time scales. I don’t really support the categorisations of early, middle and late stage dementia – to me these junctures are too specific and not reflective of the fluctuations in the day-to-day life of a person with dementia. Surely aiming to help a person to have the highest level of functioning for as long as possible can only be a good thing?

2.      No matter how advanced a person’s dementia is, there are opportunities for participation in everyday life, it's just that we often don't see these or have time to help them happen. Key examples from my personal experiences are my dad occasionally wanting to take the spoon and feed himself his pureed meal in the last year of his life, or finishing a song in perfect time to the music when he otherwise had virtually no speech. These achievements came about through perseverance, patience and offering encouragement.

3.      We are never going to know what people with dementia are truly capable of if we don’t actually put in the services, like we have for people who experience trauma or stroke, to actually see what is possible. How do we know reablement services aren't just as effective as any of the drugs we currently have , or might have in the future, to treat symptoms or slow down the progression of dementia? Admittedly there have been a few areas of the UK offering reablement to people with dementia, but it certainly isn’t a mainstream service.

Sadly my dad never really experienced any form of official reablement. At the point he was diagnosed with vascular dementia, following ten years of mini strokes and then one much larger stroke, his quality of life and abilities had deteriorated very rapidly. As a family we had been trying to support him but we really didn’t understand what was happening to him, and the health and social care professionals in his life hadn’t been proactive enough to grasp the bull by the horns, diagnose, explain and, crucially, offer dad and us the support we needed.

 

Enabling dad to have maximum independence, occupation and enjoyment in life was pretty much impossible once he was confined to hospital and then moved into the first of the three care homes he would go on to spend the last nine years of his life in. We had some small victories over the years, largely stumbled upon through pure chance – examples include discovering the power of music therapy, the joy of food and eating and the wonderment of connecting with the natural world – but nothing that really fits how I would interpret reablement if I had the chance to live those 19 years of my dad’s dementia with him again.

 

My top tips for reablement success for a person with dementia would be:

1.      Offer reablement in the person’s own home - the type of residential centre my half-brother went to isn't going to be the right model for the majority of people with dementia given the confusion and anxiety a new environment could cause. Equally hospitals, however dementia-friendly they are (and the one my dad was in really wasn’t), don’t offer the familiarity, calmness, opportunities for exploration and expression or the personal touch of home.

2.      Involve a multidisciplinary team of professionals, most notably people who are from the allied health professions, all of whom should be specifically trained in dementia and all of whom should take their lead from the person with dementia. Remember, professionals can learn from the person as well as imparting their own knowledge.

3.      Think out of the box. Is there technology that can help? What about the latest guidance on dementia friendly environments, has this been translated to the person’s home? Away from health/social care, are there individuals within the local community who can provide pastoral or occupational support, visiting or enabling the person to get out and about to enjoy hobbies/activities? Going further, can the person be enabled to get involved in community work/volunteering/awareness raising/public speaking etc – there are some fantastic peer support and mentoring services than can encourage such activity for people who feel it is right for them.

4.      Belief in the possibilities of reablement both for the person with dementia and those who are supporting them – be they family members, friends, neighbours or health and social care professionals – is vital. This means moving away from the historical or traditional views of dementia and seeing the exciting possibilities of reablement and how it feeds into living well.

Alongside these tips, do take a look at this page on the SCIE website: http://www.scie.org.uk/publications/guides/guide49/dementia.asp

 

Interestingly from the perspective of the timely diagnosis agenda, reablement fits perfectly with the idea of catching symptoms early and maximising the person’s potential. Currently diagnosis is often just a label and a prescription – reablement offers something more tangible, providing strategies and opportunities to grow into that diagnosis and live well with it. It should be at the heart of good post-diagnostic support, and if it were, those of us who are doubtful of the merits of diagnosing earlier and earlier might see more justification for it if an accurate diagnosis can be made.

 

Reablement isn’t about giving people with dementia or their families false hope or denying the reality that dementia is still a terminal disease. What reablement offers is the chance to make the best of what we have and do something practical to underpin the message of living well with dementia. Without reablement, I think that there is a very real risk that we give up on people with dementia far too easily.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Join the debate

Back at the start of 2013 I published a blog detailing My Dementia Wish List for the year. Ten months later seems an appropriate time to revisit some of these goals and, looking forward to the G8 Dementia Summit in London in December, explore some of the key issues in the world of dementia right now.

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CARE


How do we improve care for people with dementia?

By providing care that is person-centred, dignified, respectful, understanding  and compassionate. By offering people with dementia the chance to achieve, promoting their independence, ensuring that we always involve the person and seeing their abilities before their disabilities.

How do we support family carers more?

Listen to carers and find out what they need as individuals. Don’t employ a one-size-fits-all model. Ensure all support is family and relationship centred, and recognise family carers as a vital part of the 'CareForce'.

Do we need more specialised training?

It is vital that we offer high-quality, specialised dementia training to both professionals and family carers alike to engender a new breed of 'CareForce'. With the right training we can empower the people on the frontline of care - in homes, care homes and hospitals - with the skills and understanding that they need to support people with dementia.

Is early diagnosis the key for families facing dementia?

Timely diagnosis (diagnosis that is at the right time for the individual and their family), with good support mechanisms in place to ensure that the person with dementia and their family can ‘Live well with dementia’ is the ideal.

How do we ensure people ‘Live well with dementia’?

By putting the person with dementia and their family at the heart of joined up health and social care. Supporting, caring, loving and living with dementia as a team effort within a dementia friendly community.

How can we learn from best practice in the UK and worldwide?

Research good practice, collate that and share it. Be bold enough to highlight what we do well, and equally speak up when care is not what it should be.

How do we improve end-of-life care for people with dementia?

By looking at what individuals want. Encouraging as much forward planning as possible, and having the care and support in place to ensure that those wishes are met with the utmost dignity and respect.


COMMUNITY AND SOCIETY


How do we make our communities more dementia friendly?

By investing in educational, awareness raising initiatives amongst all age groups, crucially promoting the point that dementia friendly communities are good for everyone. We must build on Dementia Friends and some of the great local projects that are proving very successful and share their best practice. It is also vital to ensure that commitments to being dementia friendly are met by every locality to avoid a postcode lottery.

Can stigma be defeated?

I believe it can. So many other highly stigmatised diseases and conditions have managed to emerge from the shadows. Dementia can be the next one.

How to we increase awareness?

Talk about dementia. Listen to personal experiences. Provide platforms to share. Be open and honest. If everyone touched by dementia made a commitment to speak about it to someone with no knowledge, awareness would transformed.


RESEARCH


How do we improve treatments?

Through increased research, more documented evidence of what is working in practice and the sharing of good practice, innovation and intelligence. Ultimately, however, a good treatment for any individual is about finding what actually works for them, not what is supposed to work for them.

What options are there aside from drugs?

Examples of therapeutic non-drug treatments that have been shown to alleviate dementia symptoms include music, art, dance, reminiscence, aromatherapy, massage, exercise, yoga, light therapy, cooking, gardening, sensory therapy, sculpture, animal therapy, poetry etc. The list is endless, but it’s about finding what is right for each individual.

How do we prevent dementia?

With over 100 different forms of dementia, not enough is yet known about each form and how to prevent it. On a general level, following all the well-known advice about healthy diet and lifestyle, regular exercise, and ensuring that you have enough sleep can only be a positive step in trying to prevent a host of illnesses and diseases, including dementia.

Will we ever have a cure for dementia?

Science is advancing. One day maybe we will!


THE FUTURE


Can we cope with the predicted levels of dementia in the future?

Many of our health and social care systems are already overstretched. Far more capacity needs to be built into these systems in order to fully support people with dementia now and in the future. We will also need to look towards innovation and flexible care models to ensure that we can meet demand for services and expectations of what services should be providing.

Is technology the answer to improving care?

Technology is an increasingly important factor, and for people with young-onset dementia it has a particular interest as individuals in this age bracket are often leading very technology-rich lives at the point that they are diagnosed. Technology undoubtedly has its place, but it must never be seen as a replacement for human contact and interaction.

What can the G8 Dementia Summit produce?

Hopefully a really positive consensus on the way forward for research and care for people with dementia worldwide. It will provide an unprecedented platform on which to discuss the major issues facing professionals and families, and provide a much need focus on a disease that poses one of the greatest challenges to relationships, medicine and care that the world has ever seen.

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This is, of course, just a snapshot of the current picture. Join the debate by adding your comments below.

Until next time...

You can follow me on Twitter: @bethyb1886

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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

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Remember, remember

The ‘good old days’ are often lovingly joked about as people get older. Wartime stories, tales of food shortages, working conditions, ‘make do and mend’, homes without technology and roads free of congestion can all seem very old-fashioned to my generation and those who are younger. If history is not something that captures your imagination, you may view talking about it with boredom, possibly even contempt, but remembering where we come from becomes increasingly important as we get older, and if someone develops dementia it takes on a vitally therapeutic role.

A commonly recognised characteristic in dementia is an inability to remember current or recent events, whilst having an often perfect recollection of the past. Indeed it can be when a loved one consistently exhibits this behaviour that their family become concerned about the possibility that they are developing dementia. Often the further back in time someone with dementia goes, the stronger their memories become, until they seem to be exclusively living in a time that those around them can struggle to appreciate.

In a society that craves immediacy and recognition, people with dementia are often considered to have ‘lost’ everything by being unable to live in the same moments that we do, but in many respects I view the way someone with dementia lives in the past as a safety mechanism that the disease places around the person. After all, for most people their youth and childhood is a magical time of carefree adventure, excitement, happiness and discovery. Retreating back to the years when you felt cocooned, loved and nurtured is something most of us would like to do when we hit low points in our adult lives, and whether you have dementia or not, or will go on to develop it at some point in your life, the memories of your youth will remain with you forever – in that respect, as in many others, people with dementia are not so very different from those without it.

A common mistake many people make when caring for someone with dementia is trying to persistently drag them into an understanding of the present, rather than learning to embrace the past. Questioning someone with dementia about their day or seeking opinions on current events is often very bewildering for them and frustrating for you. What you should ask yourself is why are you asking them to join your world when it is far easier for you to participate in theirs?

Unless you grew up with the person who has dementia you will never really know the true picture of the world they are living in, but that does not mean you cannot embrace it wholeheartedly. Reminiscence has a major role to play in dementia care in all areas, whether someone is living in their own home, in a care home, in hospital or involved in community based activities. It can stimulate interaction, provide support for someone with dementia through being non-challenging to them, promote comfort by nurturing happy memories, bring families together in a shared activity of talking about the past, help professionals gain a valuable insight into the person that they are caring for, and may even result in someone with dementia surprising those around them with stories that can be insightful, inspiring and very moving.

As a key part of personalisation, reminiscence can take on many forms. For some people it may be about favourite music, films, poetry, novels or art, whilst for others it could be best approached by reliving key sporting moments, fashions, architecture, signage, engineering or customs. Pictures, both personal and public, that evoke memories and illustrate what someone with dementia is thinking about often play a vital role in reminiscence therapy; everything from old seaside photos to domestic scenes can stimulate conversation (see the cards made by 'Many Happy Returns'), alongside newspaper headlines of major events, old magazine covers or photographs of famous faces.

It is generally far easier to promote reminiscence when someone is in their own home, surrounded by many of the things that can help to support their memories. Once that person moves into a care home or is taken into hospital this often changes, leaving them very disorientated, disengaged, and alienated by their surroundings. It does not have to be like that, however. Memories can be supported in EVERY environment, bringing huge benefits to the person with dementia, their families and the professionals caring for them. 

Reminiscence therapy is not an expensive option for health and social care providers; it simply requires an adjustment in thinking that is about supporting people with dementia in their world, rather than expecting them to adapt to ours. Reminiscence should not just be confined to specific ‘activity’ sessions either. It should be everywhere in every moment, and become a partnership between professionals and relatives, especially as family knowledge can often make reminiscence particularly meaningful.

Dementia may rob a person of their present day, but while the past remains alive you have a window into your loved one’s world that can only bring you closer to them. Remember together, explore together and work with what dementia has given, rather than what it has taken away.

Until next time...

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