Tag Archives: Residential homes

Caring for someone with a dementia

3 Aug

 

Caring for someone with a dementia

 

There are lots of different kinds of dementia and they have slightly different presentations, but the key points about all dementias is that they are changes to the brain, that affect memory and brain function, that is deteriorating.  There can be changes in personality and the deterioration might not seem to make sense, as someone can still retain one key skill long after they have lost other key skills, it doesn’t always work that the person with dementia loses everything at a nice even pace!  And importantly, eventually it will be terminal.

 

It is useful to get a diagnosis of the kind of dementia that the person has, as it will help the carer to understand some of the changes that will happen.  Diagnosis is also a gateway to access some services, that will support both the person with dementia and/or their carer.  And making sure that the carer is supported is really important, as without the carer their life would be much more impaired and disempowered.  The carer will facilitate the best outcome that can be achieved.  In the UK dementia costs £26bn a year, the biggest part of that figure is made up of the work of unpaid carers, £11bn, and the NHS and social services make use of that unpaid care, which means supporting the carer to ensure that carers can keep going.

 

There is no cure for dementia, there is a lot of worldwide work being done currently looking at different cures, creating new drugs and repurposing existing ones and although there have been some promising initial results, I have been told that a cure is a least 10 years away, if not more.

 

Because there is no cure, the only therapies are those that keep the person in the state that they are in, but do not roll back the clock on the progression of the illness.  These drugs only work for a certain period of time, as they will not stop the underlying progression of the illness, but will maximise the cognitive abilities that they have.

 

The other therapies that are useful are the social interactions, as long as they are meaningful and there is a lot of work being done on these.  Music seems to be quite powerful to many people.  Football dementia cafés are great for football fans and here in Plymouth we are lucky enough to have a dementia café for veterans.  Elsewhere there are dementia farms, which for former farm workers is incredibly powerful that they are once again able to participate in the workings of a real farm.  When the idea was first mentioned there was concern about the risk, but the risk is managed and the participants get a lot of value from it.

 

Carers need support and respite, they need to be able to have a life of some kind away from their caring role, for an hour, a day or a week. Family carers do an amazing job to care for people with dementia and yet they are working alongside a progressing condition that is slowly taking their loved one away.  85% of carers are clinically depressed within a year of diagnosis, it is hard dealing with the condition and its progression.

 

A person with dementia can live a fulfilling life, they can be empowered to do the things that they want to for as long as they are able to.  It takes the carer and the understanding of a whole community to do it well.

 

If you need help caring for a loved one with dementia, let me know, I understand what it is like.

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Caring for a dying relative

4 May

A coffin with a flower arrangement in a morgue

Caring for a dying relative

 

This is a very hard subject.  We don’t like to think about ourselves or our loved ones dying, but it is nevertheless an important subject.

 

If our loved one dies instantly, it is a huge shock, especially if we have not been expecting it.  If you have not had a conversation, then the next stage is commonly a state of shock before you can move into a more active mode of sorting out the arrangements.  This state of shock can last varying amounts of time, we are all different and how we deal with grief is different.

 

The death needs to be registered, the funeral arranged and then afterwards the estate can start to be sorted out.

 

If our loved one dies fairly quickly, this may give us an opportunity to say goodbye, to thank them for being in our lives and to let them know that they can go, if that is the right thing to say to them.  Saying thank you and goodbye is something we do for us, for them too of course, but letting them know that it is OK to go is something we do for them and a bit for us.  How we do that and whether we can do that will be different, sometimes we are not ready to let our loved ones go, especially if they are still young and we think that they have not finished their lives.  We can then have a little time to process the situation and try to emotionally deal with it.  And we cling to hope.

 

If our loved one dyes a lingering death, then we have that time to say thank you and goodbye and assure them that it is OK to go (assuming that it is).  We are upset and then process how we feel about it, however we cannot live on the adrenalin that this heightened state of anxiety will give us, so we get slightly used to it.  During this period of waiting, our loved one might rally, so we are given hope, perhaps only a glimmer or maybe a shining light, but we have hope.  And then they deteriorate and our hope dies.  If they have a fluctuating presentation, we can cycle through these emotions of despair and hope and we start living slightly on edge all the time, just waiting and not knowing.  This is very hard to watch as we see our loved one slowly slip away.

 

What happens if our loved one experiences a painful death?  Pain is something most of us fear.  We often wish we could trade places with a loved one in pain, but we can’t.  We can hold their hand, talk to them, feed them, play them music and lots of other things to try to comfort them and us, but we cannot take their pain.  Pain can be managed with drugs, but often it cannot be eliminated, watching a loved one in pain, whether or not they are dying is a horrible experience for both them and us.  I have been involved with many families when they are dealing with a loved one dying and a “peaceful” death is preferable, even though the death is often dreaded.

 

There is a finality with death, our relationship is forever changed, we can still love them, just not in person.  Death may be the time we stop and grieve, but if we are involved in sorting out their affairs, we may keep ourselves busy with that and not grieve and it is only when that is over that we do finally stop and grieve, which can come as a huge shock to anyone not expecting it, particularly since the death was some time before.  Greif takes time, but we can get over it and move on with our lives.

 

If during any of these stages we need help, friends and family may be around, but if we are faced with administration, legal or advocacy issues, I am here to help.  And I understand.

The vulnerability of the elderly

12 Nov

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The vulnerability of the elderly

 

The first thing that I want to say is that most carers are doing a good job, most try really hard and genuinely care about the people they are looking after.  Most paid carers are honest, compassionate and hard working. But…

 

I’ve considered recently just how incredibly vulnerable the elderly are, especially those with memory issues.  I was sitting in the lounge of a care home listening to a resident call out to a carer or anyone for help and wondered to myself, if she was claiming that no-one was helping her, who would believe her?  Someone did go to her in this case, but it made me wonder.

 

I’ve had residents claim that money went missing, I had one resident of a care home claim she’d lost £1,000, but as she was never given this much money, it is safe to assume that this didn’t happen, but she did have smaller sums and it is entirely possible that this was stolen, as she would on occasions go out and needed money to do things she wanted to when she went out, but there was no mechanism to deal with the loss of for example £10 and to a carer on minimum wage that could be enough of a temptation.

 

I’ve had a family member say that when they went to the care home and gave their father a bath, the watch that he had on his wrist didn’t belong to him.  I’ve heard that kind of tale lots of times, that someone with memory problems sees for example a watch and thinks “I have a watch, it must be mine” or something like that and picks it up.  Things go missing, but how do we tell apart the things that are intentionally stolen for personal gain and things that mistakenly go missing.

 

The Mid Staffordshire scandal in 2009, which was reported upon in the Francis report issued on 6 February 2013 was about the ill treatment and lack of basic care within the hospital, but the fact that this went on for such a long time is testament to how voiceless and disempowered these ill and vulnerable individuals were.

 

I don’t know the answer, other than to take seriously any allegations and to vet individuals caring for these vulnerable people.  We then take it on faith that they are doing a good job and hope our faith is well placed.  The elderly are very vulnerable and the more that can be done to protect them and other vulnerable groups like them the better.

Appeals

22 Oct

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Appeals

If an assessment has been unsuccessful, then it may be worthwhile appealing.  There are 2 reasons for appeal, one is that the process has not been correctly followed and the other reason is that you disagree with the clinical decision.

The decision is made by scoring the 11 named domains and domain 12 (if used).  If the score is 1 priority, then funding should be granted.  This usually means that the person would be in hospital or a secure unit; it would be unusual for them to be in the community or in a mainstream care home.  If they score 2 severes, then funding again should be granted.  I have come across lots of people who have scored severe in respect of their cognition, but it is not very common at all to score the second severe.  Again therefore there are not many people who qualify in this automatic funding.

The other way that funding is granted is “with a number of highs and moderates”.  Then the CCG will look at the nature, complexity, intensity and unpredictability.  This is the route that the vast majority of people who obtain funding that I’ve been involved with get it.  The problem with this route is that it is very much up to interpretation.  Although the aim of the Department of Health is to have a nationally consistent decision making process, each CCG area does make slightly different decisions and therefore some CCG areas are granting funding to a proportionally larger group.

I generally don’t advise appealing a decision solely on the basis of a problem with the process, as if the clinical decision was denied, then once the process issue is resolved, the clinical decision will still stand and funding won’t be granted.  A complaint and an apology can work well to resolve these issues.

If there is a disagreement regarding the clinical decision, then the matter is worth appealing.  The first level of appeal is local resolution within the CCG.  This should be decision making, but not always, sometimes it is just a matter of explanation of the process, so before I go, I ask to make sure that it is decision making, I don’t want to sit there whilst someone explains NHS Continuing Care Funding to me!!.

The next step after local resolution is a CCG Panel meeting, so an entirely new group of people from the CCG should sit with the family & advocate and discuss the case, the needs of the person and what the differences of opinions are in the scoring.  The Panel meeting can be intimidating.  There is a Chair of the Panel, a representative of Social Services (hopefully) and someone from the CCG.  These 3 are the decision makers.  Therefore walking into a room with this many people when you are about to talk about a loved family member when they are unwell can be intimidating.  It is also an opportunity to talk about what has happened since the assessment meeting, which might shed more light on the situation, such as a situation at that time that was considered temporary at that time, may be permanent.

Once the matter has been finalised within the CCG the next level of appeal is to the Strategic Health Authority.  They also invoke a Panel process, as well as the chair, representative from a different CCG and representative from a different region by social services, there is usually someone taking minutes and a clinical advisor.  The process is slightly adversarial,  in that the CCG go through their process and often defend their decision and position, whilst the family are still trying to argue that their loved one should be eligible, giving clear reasons why they disagree.

If the decision is still unfavourable, then there is appeal to the Healthservice Ombudsman.  The Ombudsman will not make their own clinical decision and substitute it for the SHA or CCG’s decision.  They will look at the process and if they consider that the process has been reasonably followed, they will accept that the decision is reasonable, unless it is so clearly wrong that it would be considered unreasonable.  The Ombudsman is therefore a good place to tackle administrative issues along the way, but I have not found that route very helpful to tackle clinical decisions that I disagree with.

 

The Recommendation

15 Oct

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NHS Continuing Care Funding – The Recommendation

 

Having gone through the 11 named domains and the mop up clause of domain 12, the next part to consider is the recommendation.  As individuals or advocates, we are not involved in this part, it is for the Multi Disciplinary Team (MDT) to decide on the recommendation.  Their recommendation should be supported by the Panel unless there are clear and articulated reasons for going against their recommendation.  Those reasons must of course be fair and reasonable.

 

So how is the recommendation done?  The MDT must then, metaphorically speaking, piece the person back together, having taken them apart with the 12 domains.  The MDT then looks at the “Nature, Complexity, Intensity and Unpredictability” of the individual.

 

The advocate can discuss the recommendation with the MDT, but often the MDT won’t give a recommendation at the assessment meeting, sometimes because they are not recommending funding and don’t want to risk a confrontation in front of the family.  If they are recommending, then they might say it in front of family, but lack of discussion about their decision should not be taken as not recommending.  Sometimes they just need to go away, review their findings & think about it or possibly get some more evidence before they are able to make their minds up.

 

The nature of the needs is often about one or two conditions and the range of needs as a consequence.  So for example, dementia might be the condition and from that comes confusion, poor communication, poor risk assessment, poor continence etc.  Nature, unless it is an unusual condition is not usually the element that will be most important.

 

Complexity is often about how different elements of someone’s condition interact with each other.  So for example, if someone has poor mobility and therefore struggles to get up to go to the loo, they can end up with a UTI due to reluctance to drink.  The UTI, like chest infections, can set up a kind of toxicity in the body, which then leads to that person being overall physically and mentally very unwell during the period of the UTI (or chest infection).

 

Intensity is about a high level of need, this is often because that particular need has scored high or severe in the various domains.  It is about a lot of need, so someone underweight would need constant encouragement to eat.  Encouraging someone to eat is not necessarily a high skill task, but needs to be done many times during the day.  It could however require a high skill level such as specialised wound dressing of the skin, which needs regular changing.  It can take quite a while to do a complex dressing, which might need changing every few days, but not multiple times per day.

 

Unpredictability is what it means in normal language.  So if someone has a fluctuating health condition, then it would be unpredictable.  It could also be something that reoccurs regularly, like having lots of UTIs or chest infections.

 

It is hard to explain in simple terms why someone should be funded for Continuing Care and others aren’t, but it is about the persons needs being difficult to look after.  That doesn’t mean that the person has difficult behaviour (although they might have), it is that their healthcare condition/s are difficult to look after.  Someone with regular, but fluctuating aggressive behaviour might be difficult, but someone with a complex skin care regime would not be seen as difficult, just difficult to look after, they need a lot of time and skill.

 

I’ve found that the most important one of these is unpredictability and the least important is nature, with complexity and intensity someone in the middle.  But if the person is challenging to look after, then hopefully they will get a positive recommendation.

The Domains – Domain 12

8 Oct

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Domain 12

 

Domain 12 is the additional place to put something that has not already been covered by the first 11 domains (as there is no double scoring).  There is no information about what should be included and little guidance, as there is with the other domains.  It does however have to be a healthcare need and something that has not yet been covered by the other domains.

 

Mostly I find that people are covered well by the first 11 domains and often don’t score anything in Domain 12, but as with everything, there are exceptions.

 

The exceptions that I cover are addiction of some kind, but to the extent that is it a problem.  Which is when an unhealthy relationship with anything begins to affect the person’s ability to function day-to-day, then the unhealthy relationship becomes a dependency.

 

I’ve had a number of clients who were addicts (although I appreciate that this is outdated terminology and dependent is the preferred terminology).  I’ve had clients that had dependency on alcohol, tobacco and clients who were just looking for the next high, whatever it was, so if alcohol and tobacco were not available, then sex would do.  The care regime will try to manage their dependency, but this is something that they are encouraged with, rather than a therapy they have chosen in order to beat their dependency.

 

I also score excessive sleepiness in this domain, as it can become a barrier to intervention, so that, similar to a period of being unrousable, it is not possible to take food, drink or medication when asleep.  It is not uncommon that toward the end of life, someone becomes ever increasingly sleepy, so it is a question of whether or not that impact on the provision of care.  This sleepiness is something that they can be roused from, so is not an ASC, but just not easily roused and even when awake remain relatively sleepy, so if they are being fed for example, it will take a long time and they may have minimal appetite and would fall asleep again very quickly, possibly even part way through the meal!

 

I’ve also scored an overall generic frailty, which can happen with the very elderly or at the very end of life.  I’ve had a few clients in the 90s and 100s and they do appear to have this kind of fragility.  It can be hard to describe, other than generic frailty, but they often do seem very fragile, as if they could easily “break” (which I appreciate is not a great description).

 

I’ve also had a client with non aggressive cancer, which would need monitoring to make sure that it did not become aggressive, as the treatment regime for aggressive cancer would be very different from non aggressive cancer, so the monitoring is for the potential change.

 

The things that would not be included and scored in this domain are the things that don’t score for Continuing Care, such as the requirement for 24hour care or that they would be unable to live alone.

 

The scoring of this domain is also very hard in the absence of any guidance.  What I try to look at when scoring this domain is the skin and drug domains.  The low and moderate scoring in skin covers the risk of pressure damage, with low scoring when the monitoring is daily or less frequently, so monitoring of non aggressive cancer would be daily or weekly and would score low.  The skin domain for moderate is about the treatment or monitoring for pressure damage multiple times per day, so if the domain 12 issue requires basic treatment or monitoring multiple times per day then it would score moderate.  The drug domain for high is about skilled monitoring for side effect or fluctuations, so any domain 12 issue that required more than just basic monitoring or treatment multiple times a day, but was effective would score high and if it was not effective, would score severe.

 

This is a hard domain to deal with and the PCTs are often reluctant to accept anything in relation to this domain, but if there really is an issue that is not covered by the other domains, then I will make the point to have it scored in this domain, even if the MDT disagrees with it being included in domain 12, it will be brought to the attention of the Panel.

The Domains – Altered States of Consciousness (ASC)

1 Oct

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Domain 11 – Altered States of Consciousness (ASC)

 

This domain has an anomaly within it.  The National Framework says that the diagnosis of any one condition is not the reason to grant funding, but this domain has the priority level of coma.  So the diagnosis of coma will obtain the funding.  The only proviso to that is that the coma has to be ongoing.  I’ve had a few clients that have had issues that fall into this domain, but so far, they have been transitory, even if they have lasted for hours, their state of being in ASC still comes to an end.

 

So the key question to this domain is what is an “Altered State of Consciousness”?  It is about not being fully conscious.  It is commonly about having a fit, such as epilepsy or a stroke.  Fits and strokes have magnitudes of seriousness and therefore their side effects and consequences have magnitudes of seriousness.  But ASC can also be a state of not fully unconscious, but at the same time not fully conscious.  I’ve had clients that become “vague” and this is not a cognitive decline, this is for a short period and is different from their day to day presentation.  They often need to sit or lie down whilst this is happening.  It is about being in a state of mental and physical “being”,  where they cannot fully engage with the outside world.  They seem “awake”, but just not fully “there”, however when the ASC passes, their normal day to day presentation will return and they can engage with their environment in the way that they were able to do before.  I’ve also had clients who were “unrousable”, so asleep, but not able to be woken from that sleep and this can last for hours at a time.  The person is safe, in that they are tucked up in bed, comfortable and warm, but unsafe in that if they remain unrousable when they need medication or food, they cannot be woken to give it to them and this can have a detrimental effect on their wellbeing.

 

ASC can also be Transient Ischemic Attacks (TIAs).  A TIA is a mini stroke, it can be very fleeting and presents as though for a few seconds the individual becomes vague and then returns.  If they were on their own when it happened, it would be difficult to tell that it happened, other than their presentation may have changed as a result.  Like any stroke, there can be some brain damage, which will lead to an altered presentation going forward, as the individual will have lost some ability.  This is often seen as a “stepped decline”, where someone will plateau, then from one moment to the next change, then plateau again until the next change.  This is a common presentation with vascular dementia (as opposed to Alzheimer’s, which tends to be a straight line decline).

 

The next thing to consider is the frequency they are happening and very importantly, what is being done about it.  With for example TIAs, often there is little or no intervention, even if the carers do realise that something has happened, they just deal with the new presentation.  During or after the ASC there could be either a prompt and/or a skilled response to the situation, which may include an admission to hospital.  The prompt and/or skilled response does not have to include a trip to hospital, but might include a carer sitting with them one-to-one for a while; it may include a drug therapy or other additional support.  It is also about the risk of harm from the ASC, as some can have virtually no effects, such a very small TIA.  Then consider the frequency, are these occasions of ASC happening daily, weekly, monthly or yearly?

 

There is no severe scoring in this domain, but there is a priority, which as discussed includes coma.  The alternative priority score for ASC is something happening most days, that does not respond to treatment and there is a severe risk of harm.  I’ve never met a priority client yet, they should not have issues with funding, but should be cared for in specialist units in most likelihood – but I stand to be corrected.