What makes a good care plan?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

- Advanced care planning/End of life wishes.

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

 

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

 

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

 

Until next time...

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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...

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From care to catastrophe

Back at the start of D4Dementia I wrote about the importance of continuity of care for people with dementia. It cannot be over-emphasised just how beneficial this is, not only to the person living with dementia, but also their families and indeed people working as carers. The chance to form a bond with a person is what can give the greatest job satisfaction and leads, in turn, to the most compassionate and personalised care.

We were particularly lucky that my father formed a bond with a carer that lasted from the day they met to the day dad died – indeed this man even came to dad’s funeral. In the almost eight years in between, this carer brought such joy to my father’s life that it could honestly be said that dad was often more pleased to see him than he was any of us.

As a family we valued this carer’s input into dad’s life higher than any other professional we worked with, so imagine our heartbreak when a change in ownership and management at dad’s nursing home resulted in wholesale changes to the care structure. Suddenly wonderful staff who had delivered an excellent CQC report just a few months previously were now leaving, bullied, ostracised and driven away, initially we suspected for racial reasons before it became clear that whatever your skin colour or race, if you were well-liked you were not wanted.

What you soon discover as a relative, when you try to halt this tide of change, is that A) private companies can run care homes as a dictatorship rather than a democracy so long as they can keep the inspectorate happy, and B) that as a relative you have no say over what happens, CQC are reluctant to support you, and the only real option you have is to move your relative to another home.

In this case, having no say included having care plans made for my father without any consultation with or agreement from us, carers who knew my dad being forced to implement care plans that went directly against what they, and us, knew to be in dad’s best interests, and no care review for a year. Ultimately this led to a chain of events that resulted in my father being admitted to hospital with pressure sores and a catastrophic aspiration pneumonia that would eventually kill him.

You cannot force intransigent managment to answer your questions, you cannot change the dictates on your relative’s care, even though you know your loved one better than anyone else, and when you turn to CQC for help, you are left very disillusioned by the incredibly slow response, lack of transparency in their actions, and that fundamentally they seem very unmoved by so many vulnerable elderly people being at risk.

Add to this the loss of care staff who you have known since the day your relative moved into the care home, and whose work and reputation you would defend as both a relative of someone in their care and also as their friend, and you have a situation where you feel utterly helpless. No matter how many times you mull it over in your mind, you will never find a resolution to the fundamental question of why people with no knowledge or understanding of dementia, no concept of compassion or indeed a caring bone in their body, would wish to run a care home where the most vulnerable, sensitive and highly dependent amongst our cherished elderly live.

To see what had been such a happy home, where relatives, residents, staff and management worked together, pulled apart within a matter of weeks is something I will never forget. Not only did my dad lose the continuity of care that had added immeasurable quality and richness to his life over all those years, our time with him was blighted for weeks by on-going arguments, upset and disharmony. We lost friends, happiness and actually, in the end, dreaded visiting.

Having a loved one in a care home is hard enough for any family, but it is the bonds you form with staff, and the joy and comfort you see them bring to your relative, that make it bearable. There is no price you can put on that, and no agency that you wouldn’t beg for help to try and halt the tide of catastrophe. Tragically, having persevered with trying to change a situation we clearly could never change, we had actively begun to seek a new home for dad when, on that fateful night in March 2012, he aspirated on his own vomit five times, setting up a pneumonia that his body just could not fight off.

My advice to anyone going into the caring profession, be it as a carer, nurse or in a management role, would be don’t do it unless you can care about others as much as you do your own flesh and blood. If you are a manager, don’t be a dictator, don’t treat residents as a commodity, and don’t make the lives of their families unbearably hard. When staff are loved by residents and relatives it is for a reason; we know how hard it is to find these wonderful people, and how special they are, so listen to us. Finally, above all else, remember this: care homes are for caring, prisons are for punishment.

Until next time...

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