PCA Support Group Q&A Session 24 th April 2020 Many thanks to members of the PCA Support Group who submitted questions in advance of and during our virtual meeting. Thanks also to the following contributors for their input in and help with collating these answers: Catherine Ader, Emilie Brotherhood, Professor Seb Crutch, Professor Dame Hazel Genn, Emma Harding, Michael Marshall, Roberta McKee-Jackson, Professor Jonathan Schott, Dr Aida Suarez- Gonzales, Claire Waddington, Jill Walton, Millie van der Byl Williams, Olivia Wood, Dr Keir Yong and Nikki Zimmerman. Continuing healthcare (CHC) funding Q: Will my wife with PCA be eligible for CHC funding? This question was answered during the virtual support group meeting, see 55:25 of the recording here. *Warning: there is the likelihood of being rejected when first applying for CHC funding, although you can attempt to appeal if rejected. Only a small number of people do actually get CHC funding and you do need to have quite a severe health need to get it, but people should definitely still be assessed if it seems at all likely that they will be eligible. An Initial Screening Test is carried out and if a possible likelihood is found then a more thorough assessment is explored by two or more health professionals. There are 12 categories in the assessment: • Breathing • Nutrition • Continence • Skin integrity (including wounds, ulcers, tissue viability) • Mobility • Communication • Psychological and emotional needs • Cognition • Behaviour • Drug therapies and medication; symptom control • Altered states of consciousness • Other significant care needs Each are rated from low/moderate/high/ severe/priority. You have to score in the high/severe/priority range, with at least five categories at ‘high’ or one at ‘priority’ to qualify. COVID-19 guidance is that nobody will be assessed for CHC until the situation has been resolved. Enquiries: [email protected]| www.raredementiasupport.org
Transcript
PCA Support Group Q&A Session24th April 2020
Many thanks to members of the PCA Support Group who submitted questions in advance of and during our virtual meeting. Thanks also to the following contributors for their input in and help with collating these answers: Catherine Ader, Emilie Brotherhood, Professor Seb Crutch, Professor Dame Hazel Genn, Emma Harding, Michael Marshall, Roberta McKee-Jackson, Professor Jonathan Schott, Dr Aida Suarez-Gonzales, Claire Waddington, Jill Walton, Millie van der Byl Williams, Olivia Wood, Dr Keir Yong and Nikki Zimmerman.
Continuing healthcare (CHC) fundingQ: Will my wife with PCA be eligible for CHC funding?
This question was answered during the virtual support group meeting, see 55:25 of the recording here.
*Warning: there is the likelihood of being rejected when first applying for CHC funding, although you can attempt to appeal if rejected. Only a small number of people do actually get CHC funding and you do need to have quite a severe health need to get it, but people should definitely still be assessed if it seems at all likely that they will be eligible.
An Initial Screening Test is carried out and if a possible likelihood is found then a more thorough assessment is explored by two or more health professionals. There are 12 categories in the assessment:
For anyone being discharged from hospital quickly to free up space and who needs additional care, the government has agreed that the NHS will fully fund the cost of new or extended out-of-hospital health and social care support packages during the emergency COVID-19 period.
This applies to new care packages and to enhancements to existing care packages agreed on or after 19 March 2020. People can still appeal any CHC decisions that were made beforehand, but it is likely that this process is going to be severely delayed as a result of the pressure on NHS Clinical Commissioning Groups (CCGs).
During this period anyone can apply for CHC, but no assessments are being carried out and only in certain cases will initial screening take place. If you need extra care or care home admissions and cannot afford to pay you must contact your Local Authority.
With regard to CHC entitlement, guidance can be found online here.
Regarding other funding, you can check eligibility for PIP (Personal Independence Payment) here and for Attendance Allowance (over 65s) here.
There are also online benefits eligibility calculators here and here that might assist.
We would be happy to arrange a one-off advice appointment with you as part of the RDS Advice Service to advise further on the eligibility criteria for CHC and PIP, how to claim, and other advice on your benefits entitlement tailored to your circumstances. Please request an enquiry form from [email protected].
Comment from RDS member: If filling out PIP or ESA (Employment and Support
Allowance) forms you need to put down your worst days.
Many places can offer help with completing forms too, such as Carers Centres and Citizens Advice Bureaus - your local Alzheimer’s Society Dementia Support Worker will be able to identify who is commissioned in your area to help.
Q: What is the advantage of CHC (continuing healthcare) funding apart from the financial benefits?
Please note: the below has been drafted by the RDS Legal Advice Service as general information and should not be treated as legal advice for specific individuals. Please contact the RDS Legal Advice Service if you would like any specific advice relating to your personal circumstances: [email protected].
It is important to note that major changes to NHS Continuing Healthcare (NHS CHC) have been introduced as a result of the Coronavirus pandemic, in particular to the NHS’s duty to carry out assessments. Assessments can now be postponed until after the emergency period has ended. This is likely to result in a huge backlog of assessments and even greater pressure on the NHS’s future resources. You can find more detailed information about the effects of Coronavirus on NHS CHC here. There are also some alterations to Local Authority Care Act duties that you should be aware of.
The principal advantage of NHS CHC is financial: it is free at the point of use. Care provided by a Local Authority under the Care Act 2014 is subject to a means test with a very low threshold for private contribution, and the private provision of care can be extremely expensive.
Accessing NHS CHC is much more difficult, however, as the eligibility criteria are narrower than those used for assessing eligibility for local authority care:
1. The individual must have ongoing significant physical and/or mental health needs, and
2. Having taken into account all of the individual’s needs, it must be said that the main aspects or majority part of the care they need is focused on addressing and/or preventing health needs.
The non-financial benefits of NHS CHC are mostly apparent when compared to local authority care, rather than private care. NHS CHC allows for individuals with complex health needs to receive treatment and care from people with particular expertise. It also allows for greater communication between the skilled staff who are providing care to an individual, which may improve the overall service and quality of care that the individual receives.
A further benefit of seeking Continuing Healthcare is that, even where an individual is assessed as not being eligible, the NHS may still contribute to the care under a ‘joint package’ with the local authority. This allows for direct input from the NHS in the care provided to the individual, and again may be helpful where an individual has complex health and care needs.
Lasting Power of Attorney (LPA) Q: Is Lasting Power of Attorney necessary if I am ‘next of kin’?
This question was answered during the virtual support group meeting, see 57:38 of the recording here.
It’s important to note from the start that, being next of kin does not legally entitle you to make health or financial decisions on behalf of your relative.
In many instances, in order to represent your loved one, you will need a Lasting Power of Attorney in place. We advise members to discuss an LPA with their family and loved ones as early as possible in order to make an informed decision.
An LPA is only valid if the individual has the mental capacity to set it up and hasn’t been put under any pressure to create it. Once in place this will ensure that financial and health decisions are made by an individual your relative trusts rather than an external team of professionals having to make decisions on what they believe will be in the patient’s ‘best interests’. It is important to remember that you can only set up an LPA when you have mental capacity.
A Health and Welfare LPA is the most useful when pursuing a claim for NHS Continuing Healthcare funding, as most NHS-related establishments will attempt to insist on it before liaising with someone on a patient’s behalf. They can refuse to disclose medical records relating to an individual if the family are not in receipt of a Health and Welfare LPA. Making decisions about future medical care will become very difficult. In such cases, family or friends must obtain a Deputyship through the Court of Protection if they wish to be involved with decisions surrounding their relative’s ongoing care.
A Deputyship works in the same way as a Power of Attorney; authorising a person to make decisions for Health and Welfare and/or Property and Finance matters on behalf of their incapacitated relative.
The Court of Protection will decide if it is necessary for ongoing decisions to be made on an individual’s behalf, and whether the nominated person is suitable to be appointed to that role. They will also ascertain that there are no objections to the Deputy’s appointment.
The Court of Protection route is always more expensive, time-consuming and inconvenient. In particular, it requires a detailed examination and background check of the person nominated to act as a Deputy and is far more specific in the permissions it provides.
A Deputy must fulfil a number of ongoing legal obligations including the payment of an annual fee and the submission of an annual report to the Court of Protection which is not required under the LPA option. Further, the Court of Protection is exceptionally reluctant to provide Health and Welfare Deputyships, which can cause issues when attempting to secure the necessary medical records needed when making an NHS Continuing Healthcare funding application.
It is important to note that this applies to everybody – not just patients. We should all have a Lasting Power of Attorney set up for ourselves. We should have this as early as possible and at all times.
Q: How many people should you have acting for you in LPAs?
Please note: the below has been drafted by the RDS Legal Advice Service as general information and should not be treated as legal advice for specific individuals. Please contact the RDS Legal Advice Service if you would like any specific advice relating to your personal circumstances: [email protected].
There is no single answer to this question and it depends on each person’s individual circumstances. There are, however, some important things to bear in mind when deciding how many attorneys to appoint.
First, it is very important for a donor to have complete trust in their attorney or attorneys. If the donor has any doubts whatsoever, they should consider whether there is someone better placed to take on the role. This might be a professional person such as a solicitor or accountant, although these people will charge for their services.
There is a balance to be struck between giving attorneys freedom and flexibility to effectively act on a donor’s behalf, and ensuring that the donor’s interests are well protected. If more than one attorney is appointed, the donor can choose whether they will act jointly or severally, or jointly for some matters and severally for others.
‘Jointly’ means that all attorneys must agree every decision together. This may provide the donor with a greater sense of certainty, but it may also slow down the decision-making process.
‘Severally’ allows each attorney to act for the donor independently from other(s). This gives each attorney greater freedom to act for the donor, but provides less oversight of the attorney’s decisions.
Finally, it is worth considering what might happen if an attorney can no longer act for the donor. Where an attorney is appointed alone, or jointly with others, if he or she is no longer able to act for the donor the power will come to an end. This is not the case where attorneys are appointed severally – in this case the power will continue even where one attorney can no longer act.
Lasting Powers of Attorney also allow the donor to name substitute attorneys on their application form in case of this eventuality. This means that the power will continue to be exercisable by the substitute attorney if an attorney can no longer act. As with an attorney, a substitute must consent to being included on the form and should be chosen with the same amount of care.
Hospital Q: How to manage if my husband needs to go to hospital because he cannot speak in any meaningful way to hospital staff?
This question was answered during the virtual support group meeting, see 59:19 of recording here.
The RDS Direct Support Team has put together a Hospital Resources Pack for each rare dementia subtype – please contact us directly if you would like to access these at [email protected].
NHS England guidance states several exceptions to the suspension of visits to people in hospital during the COVID-19 crisis. One of those exceptions includes people with dementia. This is determined on a case-by-case basis and you should discuss this with the ward or department beforehand if your husband gets admitted.
You can also create a brief booklet with essential and relevant information about your husband and tips to support the healthcare professionals to communicate with him. You can also ask them to video call you when they need to interact with him, so you can provide support. It is important that the staff looking after him are aware of his communication difficulties and provided with some guidance about how to handle them.
If possible, write in advance to the medical teams your husband is due to see and, if he is an in-patient, provide a notice to be tied/placed securely at the head of the bed that explains your husband’s diagnosis and the support he needs (notices are available in the Hospital Resources Packs we have created – please contact us at [email protected] for access.)
Do not assume that people on the ward will know what PCA is; the patient may know more about the condition than the healthcare professional who may be anxious about new conditions, so use your expertise. You can also direct them to the RDS website.
Comment from RDS member: John’s Campaign has established the difference between a carer and a visitor during the current crisis. Hospitals in general appreciate the support of the carer even at this time.
Q: How do we make a decision about whether someone with PCA should be cared for at home or in the hospital if they are ill with COVID-19? / I have heard (from a retired GP) that if someone with dementia gets COVID-19 and goes into hospital, they will not be ventilated. Useful to know as this may help determine whether you want to keep a person with PCA at home rather than exposing them to hospital.
There are no definite rules about who will or will not be ventilated if they have COVID-19, and this decision, when needed, will be based on the individual circumstances of the patient, including any other health problems they may have. If anybody becomes unwell with COVID-19 at home and has concerns about what they should do, they should take advice from the NHS.
Clearly admission to hospital is the last resort, but there may be circumstances other than requiring artificial breathing where a hospital admission may be required. For instance, oxygen treatment via a face mask, addressing pain or distress, or to exclude and treat other non-COVID-19-related medical problems.
Where possible, making plans about what levels of medical intervention individuals would like should they become unwell should be made as far in advance as possible.
Coping with lockdownQ: My wife doesn’t understand the situation (COVID-19), she is restless and irritable. Has anyone any suggestions?
This question was answered during the virtual support group meeting, see 1:01:50 of recording here.
This is likely due to the disruption in routines – see these short video clips we have produced about managing during lockdown, particularly this one about routines.
One of the main reasons people get restless and irritable is because of boredom. Without even noticing, under lockdown many people with dementia stop the majority of their pleasant activities. If this is the case, one of the most helpful things to do is to try to establish new routines, as similar as possible to before but adapted to be done at home.
Try to provide engaging activities, but remember that advice for carers is just as important. Have a look at the Carers section of our COVID-19 Emergency Kit here.
Q: My husband has PCA and since lockdown began he has been much more confused than normal and is constantly getting lost in the house – this was happening before but not to the same degree. Do you think this is just a normal progression of the illness? He is also wanting to spend a lot of his time in bed, saying he’s always tired.
This question was answered during the virtual support group meeting, see 1:28:21 of recording here.
The COVID-19 pandemic is clearly very disruptive to everybody, but is likely to be particularly so for people with any form of dementia. Many patients and their carers are reporting more in the way of confusion and fatigue, and it is difficult to know whether or not this is part of the disease progression, a consequence of additional stresses that people will no doubt be under, or a combination of the two.
From a practical perspective it may be helpful to try and put in place some sort of light routine to give some structure to the day, building this around activities that the individual enjoys. This may include a nap in the afternoon to help concentration during the day, but may not be appropriate if this disturbs night-time sleep and normal sleep/wake patterns.
Q: What tips do you have around managing anxiety?
We know that many people living with dementia and their carers experience anxiety, and the current situation and associated restrictions may be making things increasingly difficult.
The Alzheimer’s Society has some helpful information about managing anxiety for people living with dementia, and they acknowledge that anxiety can be especially common for people with dementia who have good insight into and awareness of their condition, which we know is often the case for people with PCA.
There is also some information for carers here and on pages 7-8 of our COVID-19 Emergency Kit here.
If you are feeling overwhelmed, don’t hesitate to contact your GP, NHS 111 or a helpline for support:
• Samaritans: Call 116 123 or email [email protected] – Open 24 hours, 365 days a year
• Age UK: Call 0800 169 2081 – Open 8am-7pm, 365 days a year
• Alzheimer’s Society Dementia Connect support line: Call 0333 150 3456
COVID-19Q: There has been some mention in the press recently that Coronavirus 19 can have some effect on the brain and nervous system. Is there any possibility that this is true? If people do have atypical symptoms like short term memory impairment, is it likely that will return to normal?
This question was answered during the virtual support group meeting, see 1:04:14 of recording here.
Although Coronavirus is dominating the news, we need to remember that it is still very new. We have only known about it for a few months and information is only now beginning to come through in huge numbers of publications.
We can look at this question in two ways:
1) The effects of having a severe illness in generalIn the case of any severe illness involving fever or low oxygen intake, this may lead to delirium and confusion. An existing problem, being very young or being older means you are more likely to suffer from this. At times, COVID-19 can be an extremely severe illness, involving fever, shortness of breath and low oxygen levels, so that can cause memory problems or exacerbate existing ones. However, the symptoms should settle down once the infection is treated.
2) The possibility that COVID-19 itself could cause neurological problemsThere is another question about whether the virus itself can cause neurological problems, within the brain, the spinal cord, and nerves. The answer to this is probably yes, but it would be a relatively rare presentation of the illness. COVID-19 does seem to be the cause of small strokes in some people. There are some reports of people getting brain inflammation which affects memory. But this appears to be very few and far between, and doesn’t seem to be a major issue.
So, in summary: for most people who experience confusion this will be related to having a general infection rather than something specific to COVID-19. Strokes are an increased risk, although at the moment not a major issue; we will know much more in weeks/months/years to come.
Q: Should we be pressing for a better solution for care homes if the virus hits? How?
You can find advice on how to contact your local MP here.
You may also be interested to read this report by RDS team member Dr Aida Suarez-Gonzales about the impact of the COVID-19 pandemic on people living with dementia in the UK, particularly those in long-term care.
Symptoms of PCAQ: What do we know about what is happening in the brain in PCA and how can this explain some fluctuations in symptoms and abilities - for example sleeping a lot, and if someone can sometimes hold a conversation but at other times saying random phrases or repeating words or groups of words, and how best to respond and help?
This question was answered during the virtual support group meeting, see 1:07:40 of recording here.
PCA is a syndrome; it is a constellation of different symptoms and signs focused around vision. Causes are normally related to neurodegenerative dementias. The commonest cause is Alzheimer’s (probably about 70%) and then there are a variety of other conditions such as Dementia with Lewy Bodies. All of these illnesses have in common an accumulation of abnormal proteins, the loss of brain cells, and impaired communication between brain cells.
In terms of fluctuation, some causes of dementia which can cause PCA (notably Dementia with Lewy Bodies) are known to have very prominent fluctuations. This
issue of fluctuations has been well known for decades, although the exact mechanism behind it is not known. It is likely to be due to fluctuations of the neurotransmitters, which are the brain chemicals that mediate signals within the brain.
However, people in general fluctuate in terms of attention, cognitive performance, irritability, etc. A degree of fluctuation is common to all of us and is affected by many things. For example, whether we are comfortable, hot, cold, well fed, stressed, etc. Like many things, this can become a little more extreme in dementia.
What is happening in the brain – in terms of changes in neurotransmitters and brain pathways – is extremely complicated. We have estimates of between 60 and 100 billion nerve cells in the brain and the tools we have to understand those are fairly blunt. So we don’t know exactly what causes fluctuations. But it is likely to be a combination of how proteins are disrupting the normal brain circuitry and how this is influenced by changes in brain chemistry. However, we should not overlook the impact of external stimuli and how they are modulated.
It can be a mistake to think of things as being exclusively psychological and psychiatric or neurological symptoms. Just because something is going on in the brain, doesn’t mean that changes in people’s everyday physical surroundings and social interactions won’t affect their day-to-day functioning.
In relation to language-related symptoms, even though PCA is known as ‘the visual dementia’, sometimes language symptoms can be the earliest thing people notice. For example, the tip of the tongue phenomenon (difficulty retrieving vocabulary) or mixing up certain sounds e.g. b and p.
Repetitive speaking is also consistent with more intermediate stages of PCA. This may also overlap with people perseverating (repeating a word, phrase or gesture without an ongoing occasion or rationale for that behaviour).
When we live with severe cognitive difficulties our way of interacting and communicating with the world around us changes because our abilities change too.
When we have difficulties choosing the right words to express ourselves, we may end up picking other words that are not an accurate representation of what we want to say but are somehow connected. For instance, if I want to say that I spent the morning having a nice walk in the countryside, I may not be able to find the right words to explain myself and just say that I saw a river and mountain and trees. Even if there were no mountains or trees, they are things related to the countryside and this may be my way to explain my experience.
In addition, communication is not only language. All our behaviour is communication and we can sometimes get relevant clues by observing behaviour too.
Some tips to try and find out what those words or groups of words might mean:
• Pay attention to the stress in a person’s voice: are they anxious, angry, excited?
• Pay attention to body language when the person is speaking: where are they looking? What are they doing with their hands? Maybe they are using gestures that may give you a clue as to what they mean.
• What else is happening at the times when those words are repeated? For example, if you are having lunch it may have something to do with the food.
• As a carer, you probably know the person very well and have many shared memories together– can you link those groups of words with something that you know about them; about their identity, their childhood, their job or the things that they like or are important to them?
• If using all of the above you manage to get a rough idea of the theme the words revolve around, you may start to understand more of what the person wants to say by asking simple questions that they can respond to with yes or no.
Sometimes this may work and sometimes it may not. Do not despair when the latter happens. By doing this, you are training your communication skills and you might gain in confidence and see an increase in your ability to do this over time.
Q: Question around sleep patterns/ disorders in PCA and coping strategies. Problems include difficulty getting to sleep, waking during the night and inability to get back to sleep, restlessness, and also the desire to nap for an hour or two during the day.
This question was answered during the virtual support group meeting, see 1:28:23 of recording here.
It is important to take the holistic view and consider what is due to the brain pathology versus what is caused by external stimuli. In the current situation everybody will have had disrupted sleep and we are all adapting to changes in our natural rhythms with what is going on at the moment. Everybody is under advanced stress and uncertainty which is very disruptive in general. This is part of the normal experience at the moment.
Sunlight is important, as well as getting out and getting fresh air. We have our own circadian rhythm, which is the cycle your body naturally goes through during a day. If left without sunlight, this can change and disrupt your sleep/wake cycle. Sunlight helps to regulate this cycle due to a chemical called melatonin. Actually getting up and out in the early morning and spending time in the sunshine is good for your circadian rhythm in regards to sleep and general mood. (Although do use sun cream!)
When there is disruption of brain networks things may become more enhanced. When people are stuck inside (for example in hospitals) try to manipulate the lighting a bit – bright lights in the morning and less light in the evening can help with sleep.
Regarding napping during the day, you can be quite relaxed with this. If people have very disrupted sleep/wake cycles it may be good to keep them awake in the day, although it’s probably better to try and provide some activities to stimulate them in order to encourage staying awake. There are some medications but these should be a last resort (for example melatonin, or the very last resort would be sleeping tablets).
There is a very helpful video from Aida about access to sunlight which refers to sleep and explains the relationship between sunlight, melatonin and sleep cycles.
Q: The nurses, and GP, have said seizures are normal in people living with a dementia. Do you have any experience of this from a PCA perspective?
This question was answered during the virtual support group meeting, see 1:21:01 of recording here.
Seizures are not normal but they can be part of the illness. The brain is effectively a highly-tuned and sophisticated electrical circuit. If some of the electrical wires get disrupted as a result of accumulation of abnormal proteins, the breakdown of normal brain networks or changes in brain chemistry, then there is always the enhanced potential of seizures, which are basically little short circuits within the brain. Seizures are certainly not ubiquitous; not everyone with dementia will have them but, as all forms of dementia become more advanced, seizures become more common. Seizures in the early stages are unusual and should be raised with your doctor to make sure there is not something else going on. It is always worth flagging seizures with a health professional even in later stages.
Practical implications relate in particular to driving. However, more pertinently, seizures are very distressing for those who experience and witness them and can relate to impairments in cognition for a little period afterwards. It is important to understand what to do when they happen – for example don’t put things in people’s mouths and, generally speaking, leaving people alone is sensible. Seizures that self-terminate within a minute or two won’t need any further immediate medical intervention but if they go on any longer then you should call an ambulance (more information on the NHS website and in this St. John’s Ambulance video). Everyone who is having seizures should be assessed by a doctor.
Many medications can be helpful in preventing seizures but, as with many cases, we have to consider the pros and cons of treatments. We need to take a very holistic view about how this impacts the individual, family and day-to-day living.
So, in summary, seizures can be part of the process but certainly not an inevitable part. If seizures do occur, you need to raise it with your doctor and try and make a sort of personalised plan on how to manage them depending on the situation.
Q: Has there been any more info about the causes of PCA?
This question was answered during the virtual support group meeting, see 1:25:33 of recording here.
The term PCA was first coined in a report in 1988. Initially, there was some back and forth about whether PCA was something separate to Alzheimer’s disease, whether it was equivalent to an atypical form of Alzheimer’s disease, or whether it represented its own discrete entity but it could be caused by different things.
The most common cause of PCA is the same pathology as Alzheimer’s disease, but PCA symptoms may arise from other underlying causes, such as Lewy Body pathology, Corticalbasal Degeneration (CBD) and some instances of someone having a rare mutation causing PCA-like symptoms. When we think about causes we are often trying to understand the underlying pathology that is causing PCA. However, you could have the same underlying pathology causing different symptoms.
A key question is why are there certain factors that predispose someone to have Alzheimer’s disease but not have memory symptoms with some regions relatively spared and preserved? What we hope to do is to understand whether we can perhaps influence such factors that can provide a catalyst for any therapeutic strategies.
Q: Has there been any more information about longevity of PCA?
There are limited longitudinal studies of PCA which have been largely designed to evaluate changes in cognition based on MRI scans over several years. While people with early-onset Alzheimer’s disease (the most common cause of PCA) may have a tendency towards faster disease progression than those with later-onset Alzheimer’s disease, some people with PCA have a protracted course extending over more than a decade.
Q: Can someone address left or right spatial neglect and yet not be paralysed on the side?
If I understand correctly and the question is about whether someone might exhibit particular difficulties perceiving, or locating objects or body parts on one side more than the other, without paralysis, then yes this is correct. There are varying reports of the exact prevalence of neglect in people with PCA, but it has been documented in a number of individuals. There is some rehabilitative literature available regarding techniques to manage neglect based mainly on working with stroke sufferers.
Q: Very vivid dreams for a long time, is this normal?
Vivid dreams are not at all uncommon in people with dementia. They can relate to the illness itself disrupting the normal sleep pattern or can be associated with some medications, e.g. cholinesterase inhibitors such as Donepezil. If a medication side-effect is suspected, then sometimes switching taking medications from the evening to the morning can help; this should be discussed with the prescribing doctor before any changes are made.
Weight LossQ: Several carers have mentioned considerable weight loss in their partners and they are worried about what to do. Some of those are in residential care; some at home but still have good appetites and are eating well-balanced meals. Is it OK to give foods with higher fat content or more sweet options? Do they need to be taking supplements?
Loss of weight is a common feature in many dementias, and indeed may precede the development of symptoms. The reasons behind this are not entirely clear. Additional reasons for weight loss can include individuals forgetting to eat, having changes in what they like to eat, or not being given sufficient time and help to finish their meals.
While it is important of course to have a balanced diet, finding foods that people enjoy is very important, as eating is both about nutrition and enjoyment. If individuals are eating a balanced diet, then additional supplements are usually not needed, but if there is lots of weight loss then sometimes drink supplements with lots of calories may be needed. This should be discussed with the patient’s doctor. If the patient is in a care home, it is important to ensure that staff give sufficient help, time and encouragement as needed.
BenefitsQ: Someone with PCA may be registered as ‘sight impaired’ but may have great difficulty navigating their home, reading and writing and making a ‘mental map’ of spaces. Should people with PCA registered as ‘sight impaired’ be entitled to all the same concessions and benefits as someone who is registered blind?
This question was answered during the virtual support group meeting, see 1:14:41 of recording here.
There is one published recommendation from a neuro-ophthalmologist that states that people with PCA should qualify as being severely sight impaired, which is equivalent to being considered blind. This is with the rationale that people might be getting visual information from the eyes to the back of the brain but the brain has problems making sense of them.
People with PCA may also have difficulty making a mental map of a place. Jon and Seb, amongst others, are putting together training for people on the eye health site, and we are starting to see more people with PCA getting registered as sight impaired. Historically, this was a very contentious issue, and although we are starting to see improvements, there is still a way to go.
The Royal National Institute for the Blind (RNIB) has been contacted for input and they mention that an enhanced rate for PIP is not based on registration status; it is down to mobility and daily living, including wayfinding difficulties. Mentioning things like getting lost and the risk to safety may be helpful in getting people to understand. Remember, you can always seek a second opinion. Also see this RNIB booklet about benefits, concessions and registration which explains differences in entitlement according to whether the person is registered as sight impaired or severely sight impaired.
You are the experts. Sometimes it is the situation of ‘he who shouts loudest gets heard’. We at RDS are happy to support you with that. Go in with a list of what you can and cannot do; really list out what the issues are as sometimes this can influence people
Speaking from the experience of being a carer in this situation – don’t accept no for an answer, really shout. The people that are coming to see you more than likely won’t have a good understanding of PCA, so you really have to stand up for yourself, which is difficult, but the louder you shout the better off you will be.
Many times people get denied access and want to give up, but often on the second time appeal the success rate is much higher. When applying, expect to be turned down the first time, and then go back and appeal.
Comment from RDS member regarding benefits in Scotland: No free TV licence but free bus pass and free rail travel in Scotland.
Support with visual impairments Q: So many of the resources available for support during this time in particular but at other times too, are visual or rely on visual skills/abilities. As vision is an early victim in PCA we need to address this.
Absolutely, and while there is still a lot of work to be done, please be reassured this isn’t an unrecognised need. This is reflected in conversations Dr Keir Yong and others are having with the College of Optometrists in terms of barriers to service use. Keir has also raised this at the Vision UK Dementia and Sight Loss Committee which has representatives from professional bodies for psychiatrists, nurses and neurologists and eye health professionals, as well as links to memory clinics.
Support resources which are also available in audio format may be particularly helpful at the moment, although we appreciate that people with PCA can have difficulties with getting these started and that not all steps of the process are always completely accessible or able to be completed independently. We have created some short video clips about managing during lockdown here.
The Thomas Pocklington Trust has also put together a list of accessible apps to support people who are partially sighted or blind to stay connected and informed.
It may be especially difficult at the moment to do the usual activities which you enjoy, and which perhaps don’t rely so heavily on visual skills and abilities. We have collated a list of Arts and Culture resources and experiences which can be enjoyed from home here. Some of those which may be less reliant on visual skills or may still be enjoyable without the visual component include the following.
Make a favourite music playlist using one of the below: • Playlist for Life • BBC Music Memories
Or join an online singing group such as The Sofa Singers
Classical music: The Philharmonie Berlin is closed but has opened its digital library of performances containing more than 600 shows. Use the code BERLINPHIL to get 30-day access to the orchestra’s stunning work (look for performances conducted by Sir Simon Rattle, the orchestra’s principal for 16 years).
The Melbourne Symphony Orchestra is live-streaming its performances on YouTube, as it is closed to the public until June 30. While the 7 p.m. AEDT (or 4 a.m. EDT) showtimes may not be an ideal time to watch a symphony performance, you can rewatch the show later on the orchestra’s YouTube channel. So far, they’ve hosted performances of Rimsky-Korsakov’s Scheherazade, with plans for more throughout the closure. More information can be found here.
BBC iPlayer: Audio description is a voiceover which uses the gaps in dialogue to describe the main visual elements happening on the screen, and can help viewers with visual impairments to follow what is going on. You can search for all programmes on BBC iPlayer which have audio description enabled here.
Q: When my husband was registered blind he received initial support from a local Vista group but they could not cope with his limited ability to learn or loss of spatial awareness. What resources are available for this transition?
One consequence of people now being registered as partially sighted or blind is that they are getting more support, but some people mention this support seems predominantly aimed at people experiencing a specific visual problem, without the changes in spatial awareness or memory that often arise in PCA.
The Vista website mentions rehabilitation officers and support workers. We have put out training for Occupational Therapists and Optometrists and presented to Visual Rehab Officers, but training is only available to members of the Royal College of Occupational Therapists/College of Optometrists.
Two RDS members have made free e-learning resources on understanding and managing PCA that have been updated recently. These signpost to the aforementioned resources, as well as freely available ones such as the MOOC online course ‘The Many Faces of Dementia’ and the UCL/Vision UK conference from 2018.
We are happy to be contacted by Vista, and to be put in touch with other health professionals to provide information and training – please contact us to discuss at [email protected].
Several carers have reported showing the short animated film ‘Do I See What You See’ to different health and care professionals to help explain the visual symptoms of PCA.
Comment from RDS member: I would suggest keeping in touch with the RNIB. They helped us a lot before we knew the cause of the vision problems. They have Rehab Officers for Visually Impaired people (ROVIs). Ours didn’t know about PCA and the RNIB office at St Pancras didn’t have any leaflets about PCA at the time. You may already know this, but it would have hastened the diagnosis if they’d recognised the symptoms. The Ophthalmology Clinic we attended also appeared not to recognise what the visual symptoms might mean.
I am sorry to hear of the delays in diagnosis you experienced. In addition to the training we have delivered via the College of Optometrists, I presented to the London Visual Impairment Forum in 2019 which was mainly made up of ROVIs who were eager to learn more about PCA. Seb and I are involved in the UK Dementia and Sight Loss Committee to raise awareness of how dementia may cause sight loss; this committee has representatives from
professional bodies for psychiatrists, nurses, neurologists and eye health professionals.
Additionally, you can find some home safety tips and recommendations for people with dementia experiencing visual dysfunction here, in case this is helpful.
Comment from RDS member: the Ophthalmologist who tested my husband and found him Severely Sight Impaired said he was grateful for the information on PCA. He would otherwise have thought he had had a stroke.
We can provide information specific to Ophthalmologists about assessing and recognising PCA – please contact us if this would be helpful at [email protected].
Q: Is there anything you can do to help with eyesight deterioration and spatial awareness for PCA (newly diagnosed)?
It might be of interest to look at materials from the UCL & Vision UK Dementia and Sight Loss Conference, June 2018, which
was linked to one of the PCA Support Group meetings. This features talks on environmental adaptations (Videos 5 and 15) and assistive technology (Videos 13 and 14).
You can ask for a referral to an Occupational Therapist who may be able to advise on adapting activities to compensate for changes in sight and spatial awareness. If you register as partially sighted, you may be eligible for some support and referral to a Visual Rehabilitation Officer. It is worth emphasising to professionals, particularly those who are not familiar with PCA, that you are experiencing both sight difficulties and changes in spatial awareness.
Comment from an RDS member: It can be helpful to carry a cane when you are out so other people know that you cannot see.
We hope you have found this Q&A document helpful. If you have any further questions or concerns, please do not hesitate to get in touch at [email protected] or check out our website for additional information and resources at www.raredementiasupport.org.
DISCLAIMER: Please note that you assume full responsibility and risk in the use of information contained on our website, in our newsletters, at support group meetings and in subsequent correspondence. Our support group based correspondence is generic in nature and we are limited in our ability to offer specific advice via this means. We aim to ensure that all information is as accurate as possible but we accept no responsibility for any errors, omissions or inaccuracies, or for any adverse consequences of any kind arising from the use of support group based content. Please see the clinician responsible for your care, a social services representative, or your GP if you have specific needs which require attention. Any medical decisions should be taken in discussion with an appropriate health care.
