Monday 21 May 2012

Continuity is key

Last week a story hit the headlines about how Jeanette Maitland’s husband Ken, who was living with dementia, had been given 106 different carers during the last year of his life. Mr Maitland, from Aberdeen, had been allocated two carers four times a day to help his wife look after him at home, but instead of regularly seeing familiar faces, the couple were confronted by a stream of new care givers, which would be baffling enough for most people but even more distressing when the person receiving the care is living with dementia.

Whilst the understanding of dementia has improved significantly in the last ten years since my father was diagnosed, the fundamental inability to grasp some of the most basic facts about this disease remain all too prevalent, and the point about continuity of care is one such example.

It cannot be overemphasised just how important it is for people with dementia to receive all, or at least the vast majority of their care, from someone (or a very small group of people) that they know and have clearly formed a bond with. As communication becomes ever more challenging, known and trusted carers become the best chance someone who is living with dementia has of articulating what they are feeling, needing and wanting, and having that care provided in a way that they respond well to.

Familiarity, warmth and trust between a carer and the person they are caring for also helps to remove fear in the most vulnerable people, promotes calm and wellbeing, and provides dignity and respect during the provision of the most sensitive personal care. It can also add some much needed love and laughter into a person’s life in the most difficult times.

In the case of my father, he experienced significant upset when he was admitted to his first nursing home some 8 years ago.  Our involvement as a family played a huge role in helping him to settle into his new environment, but ultimately it was a highly trained and intuitive nurse who spotted how dad responded particularly well to one carer, and then moved that carer onto dad’s unit just so that he could permanently work as his keyworker, that made the greatest difference. This carer became dad’s best friend, and as my father's dementia progressed, he became the voice dad didn’t have, spotting what he wanted and needed in the times we weren’t at the home, and crucially also providing a link between dad and his family during those periods.

Dad’s positivity towards this carer continued until the last time he saw him, two days before dad passed away, and proves how bonds are formed and never broken, no matter how much cognitive impairment exists.

That Mr Maitland was denied the chance to experience how continuity of care could have dramatically improved his wellbeing is shameful. Anyone actively involved in the care of a loved one with dementia quickly comes to appreciate how something as simple as having the same person regularly looking after their relative makes such a tangible difference, not only to the quality of life of the person with dementia but also the peace of mind that you feel as their family.

Sadly care workers are not valued as much as they should be in our society, and as a result it is often a profession where staff retention and longevity of service is at a premium. Mr Maitland’s experience may be an extreme example of how the system failed to provide him with even the slightest continuity of care, but it also represents the severe lack of understanding about just how vital this aspect of care provision is. The people with the skills to deliver such a specialised and personal service should be supported, and actively enabled, to perform their care giving with the same group of patients every day that they are at work.

At some point in the future I will post about the problems faced when you go from having such continuity to losing it, irrevocably. A bit like a divorce that neither party agrees to or wants!

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886


  1. You are so right. Familiarity is vital when caring for someone with dementia. - .
    My lovely Mum suffers and when it became obvious that she and Dad needed external help, she was incredibly resistant at first. However, she absolutely loves their carer - as do we all!
    She's an absolute gem and is there for Dad, my brother, and me as well as Mum.
    But it's not just people. Familiar things such as items of clothing are important too. We've stopped trying to persuade her to take a different handbag out with her - even though her old faithful has seen better days. It's clearly a comfort to her.
    It's the same with other items of clothing. We just make sure they are nice and clean. If I buy her something new, I try to make sure it's very similar to something she already has and likes.

    1. Thank you for your kind comments. You are so right about familiar things. We filled Dad's room in all 3 of the care homes he lived in during his dementia with things that would remind him of his life, from pictures on the walls and family photos he could hold, to cushions depicting farm animals (he was a farmer in his working life) and mini life-like farmyard animal soft toys that were both tactile & lovely for him to cuddle. All of these were very comforting to him. I will write about this more in another post.

      I hope you continue to enjoy my blog. All the best to you & your family, Beth

  2. Beth,
    I'm really please to say that I stumbled upon your blog this evening, which happens to be fitting with this being dementia awareness week.. My mum was diagnosed with Alzheimer’s at the tender age of 58 and last year just 63 we [my Dad, Sister and myself] had to make the arduous and heartbreaking decision to find a care home. With our help and eventually some help from social services may Dad had been caring for her for five long years... After the diagnosis her deterioration was wickedly rapid, unable to speak or walk for about three and a half years..
    I admire your spirit at being able to compose this blog so soon after losing you father and it has inspired me to actually get on with my own blog, which I have been putting off for far too long.. I hope that once I get started with a bit of luck before the end of this dementia awareness week we can exchange comments and spread awareness.
    Kind regards
    Gary :-))

    1. Thank you for your kind comments Gary. I was campaigning on dementia issues for many years before dad passed away, but as he was our number 1 priority there was never the chance to start a blog or form too many other commitments. I vowed to him in the days before he passed away that I would make him proud of me, so this is just one very very tiny part of doing that (Dad was a writer himself in his day, so I have a high standard to live up to!). I have many other plans in the making too!

      We are still grieving and I think that is a unique process for each person that has no time limit, but I am finding being back at work, writing and networking, very helpful.

      I am very glad that I’ve been able to inspire you, and I look forward to reading your blog. All the best, Beth