Category Archives: dementia

Delusions in dementia

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Delusions are fixed, false ideas. They occur commonly in the course of a dementia, sometimes accompanied by sensory hallucinations. This happens as the person’s brain attempts to make sense of the world with diminishing mental resources.

Your behaviour may become incorporated into a delusion. You may be perceived as a thief who keeps taking their possessions and putting them where they cannot find them. Or as a jailer who is restricting them from leaving the house.

Types of delusions can include:

  • paranoid (suspicious, doubtful or others)
  • persecution (you are making my life difficult, harming me)
  • control (a force is making me do things)
  • reference (the numbers on a licence plate mean the end of the world is coming)
  • grandiose (I have a special mission in life).

If the person with dementia who you care for has a delusion do not try to argue against it to prove how it is false. This will only reinforce the belief and create distress for them.

Empathise with their feeling-state rather than debate the truth of their belief. Being understood and calmed will be more help to them. For instance, if they feel agitated by the belief you may say, “I am sorry this has upset to so much” or “I am sorry you are so agitated”. You position yourself as a trusted companion at a time when they may be suspicious and wary.

Medication may be a solution to help minimise the distress or the person but it should always be used with specialist medical advice and reviewed regularly.

Inclusion

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Social inclusion is a vital need and is often thwarted by ageist exclusion or by people assuming those with dementia do not need any assistance, by forgetting, or by simply not caring. Add dementia to being older and exclusion occurs frequently. If we are included we tend to flourish. We belong, are part of the flow of life, feel connected and alive. If we are excluded we tend to shrivel up isolated even in a crowded room.

When we are younger, able to converse and contribute to social engagement, inclusion is easily sustained often to the point that we don’t even notice it. We just take for granted that we are part of things. However, when we get older and have trouble sustaining conversation or have word loss or memory loss that robs us of the thread of conversation, inclusion is difficult to sustain. We can easily drop into silent watching and then disengagement. We sit silent and are somewhere else inside. Or we just settle into mental neutral. Nothing happening.

Exclusion like this is toxic for our brains. If we mentally freewheel in neutral often enough our brains get the message that its OK to stop working. Inactivity sends a message to our brains that there is no need for it to keep functioning so it stops. Use it or lose it.

Studies of brains at autopsy of people diagnosed with Alzheimer’s dementia have shown that even though their behaviour showed signs of memory loss, and cognitive problems, a good proportion of them did not have sufficient plaques and tangles to justify a diagnosis of Alzheimer’s disease. They had minimised their lives to include little social engagement or physical and intellectual activity. Other study participants whose lives were rich socially and intellectually showed few signs of dementia in their lives even though their brains showed significant AD pathology. What do we make of this? Some dementia appears to be due to chronic inactivity that starts in late middle age as the first signs of aging occur rather than due to brain pathology. Conversely, if we have rich lives with social engagement, inclusion and intellectual stimulation well into old age and do not signal to our brains that it is time to turn off, this appears to have a protective effect on brain function as we age. We have a good chance of maintaining our lives well into the time that any AD pathology is present.

So for people with a diagnosis of dementia, maintain as much brain activity and normal functioning as possible. This means including them in everyday activities as a matter of course. If possible try to avoid adjusting your expectations down to suit their level of activity. Stretch them with some challenge that they can succeed at with effort and scaffolding support. You are the Sherpa helping, guiding and supporting where they need it to scale the mountain.

Identity

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Who are you? How do you know who you are? Identity is a vital need we all have to know who we are. And it is jeopardized by the forgetfulness of dementia and affirmed or threatened by the way people around those with dementia treat them.

Our identity as persons is formed in the soup of relationships, memories, experiences and things that have meaning for us in our lives. Identity can be associated with our roles in life.  These may be occupational roles or personal roles.

What we do or have done for work may tell us who we are. I am a carpenter because I do carpenter things. I carry and use tools. I build things. I measure, saw, hammer, screw and glue. The clothes we wear for work also tell us who we are. A carpenter may wear overalls and a beanie. An accountant may wear a suit and tie to work. A farmer a thick jumper in winter and a hat.

Our identity can provide us with social standing. Because of our identity role others may offer us respect in the way they speak to us, confirming a sense of ourselves. “Hello Andy, you old bugger!” tells me that I am a friend to this person who feels fondly enough toward me to address me in a familiar way. I can now remember that my name is Andy and that I have a friend, likely an old friend. IF someone addresses us as Mr, Mrs or Ms we know they do not know us well or that our relationship with them is more formal than intimate.

If someone uses a nickname or familiar shortened version our name it tells us about their relationship with us. They feel close to us. They know us and have some affection for us. It is worth bearing in mind that not everyone is invited into the social space where it is appropriate to use a nickname. Often it is not appropriate for a younger person to use a nickname for an older person nor to use affectionate terms such as “darling”, “love” or sweetheart”. If you are not sure, wait till you sense the nature of your relationship with them and if possible ask if they would be comfortable with you calling them the name. Check it out. That in itself signals respect.

Attachment

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Attachments are the bonds we form with people, animals, places and things. The earliest bond we form is usually with our mothers. This or a bond with another person who becomes our primary caregiver becomes the template for all other bonds we make in our lives. We can launch into life with a solid sense of ourselves if we make secure bonds of affection that give us an experience of safety and security.

If however, we have early bonds that are not secure, but are unpredictable and chaotic, or harsh and punishing this tends to make us anxious and worried about affection and safety, or perhaps make us want to avoid affection. We tend to make later relationships in the same way.

Making attachments is what we do as mammals. So when dementia comes we continue to form and need relationships with others, with animals, places and things. Familiar people assume a greater importance for providing a feeling of safety and calm. All the better if these people are affectionate and warm (if that is what gives us a feeling of being safe).

It is important to remember that some people may not have ever formed a sense of being safe because of early difficult attachments. So they may react in their dementia from the old patterns, avoiding closeness or becoming anxious and insecure about your affection.

Attachments to animals and objects also remain important for some people. It may be a favourite chair, a worn old pullover, or a photo of their old dog or even her lead.

Thomas had been sitting quietly all afternoon in the lounge. He slept for a good part of it. Watched daytime TV for a time. Without notice he got up from the chair, walked to the laundry where he grasped the dog lead off the hook and said, “Come on then”. Out the back door, and into the park that backed onto his garden. Miriam, Thomas’ wife discovered him gone from the lounge about 20 minutes later. She realised what had happened, pulled on a jacket and boots, and followed him into the park. At first she couldn’t find him but listened and eventually she heard him calling out “Chlo..ee. Chlo..ee”. “There you are” Miriam said. “I can’t find her, the rascal. She went haring off into the bushes after a rabbit and I lost sight of her.” “Never mind love. She’ll come home when she’s ready. She always does”, said Miriam. Chloe was their Jack Russell terrier who had died 15 years ago. Thomas walked her in that park every day of her life and almost every day she went after rabbits, Thomas calling her and walking home with the lead in his hand. And for the last couple of years when the memory took him. Today Miriam walked alongside him and talked gently about Chloe until they were nearly home and talking about supper.

Who and what we are attached to remains important for us well beyond the moment. For some it may be people, for others objects or even places. Former towns or homes we have lived in. People we once knew. What is significant about them is the feeling we have about those places, objects, people, and animals.

It may be that an old relationship assumes a significance for a person with dementia in the present time. This can be very disturbing for a husband or wife to find their spouse talking fondly about a former husband or wife. This has noting to do with their affection for you. It has everything to do with their inability to stay in the present and the brain’s need to find meaningful connection in whatever way it can. If they can’t retain the present moment, old memories may be more easily accessible. So the brain follows the path of least effort and finds the old flame. Disturbing perhaps but it doesn’t mean they don’t love you. They just can’t hold onto you in their minds as easily as they can the long-term memories.

Use your DSB Supplement to enrol in the Diploma of Dementia Care Leadership

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The Dementia and Severe Behaviour Supplement (Australian aged care funding) can be used by aged care organisations in Australia to improve staff skills, and you can do this by enrolling in the Diploma of Dementia Care Leadership. This nationally recognised  qualification is for  leaders and those who are in roles that require leadership and who feel they need to learn how to be a better leader and to know more about modern dementia care.

McCarthy Learning has developed a Diploma of Dementia Care Leadership which is to be launched with our first intake this July 2014.

Let’s face it, most undergrad courses or entry level courses do not prepare you with adequate knowledge about dementia – most of you have probably learned what you know on-the-job.

Now is the time to consider a professional  training program that is designed to be practical and give you the knowledge you need to be an excellent leader and have the most up-to-date knowledge of best practice dementia care.

The Dementia and Severe Behaviour Supplement provides $5,894.75 for each eligible resident. If your organisation is receiving this supplement for some of your residents suggest to your manager that they support you to improve your leadership skills by enrolling you in the Diploma of Dementia Care Leadership.

The course is delivered in six blocks of  face-to-face learning for 3-5 days every two months for a year, with online learning and workplace projects.

Cost of the course this year is $7,000. Next year the cost will increase to our usual price of $9,000.

Offered in all capital cities of Australia.

Contact Karen Carver at McCarthy Learning 03 9431 0311 or find more information at www.mccarthypsychology.com.au

Happy Mother’s Day to all the mothers with dementia in Australia today

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Happy Mother’s Day to all the mothers with dementia in Australia today who are anxious about their children, who believe they have to be home with their children, who cannot remember their children’s names or faces anymore, who cannot remember their husband’s name, who become upset when they are reminded that they are mothers because they realise they have forgotten, who are anxious because they think there is something they have forgotten to do, who think they are young and need  their own mothers.

Happy Mother’s Day to you and to those wonderful people who care for you.

Responsive behaviour and dementia

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This short video is a good introduction to responsive behaviour. We used to call it ‘difficult’ or ‘disturbed’ or ‘challenging’. Responsive is a much better term that captures the fact that the person with dementia (just as you and I do) respond ti stimuli in our environment or from within ourselves that cause us to act. So in that sense the person with dementia is no different to you and me.

[vsw id=”kTFuw65SrZI” source=”youtube” width=”425″ height=”344″ autoplay=”no”]

 

How Sundowning affects me

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This is a first person account of sundowning by Barry Pankhurst (copied with his permission as below)

Some time ago on another website called ‘Talking Point’ I was asked the following question and I quote:

 

(Barry could you explain how you feel whilst Sundowning, does anything trigger it or does it just happen like clockwork?)

 

Well as there were so many ‘New Members’ I thought it might be a good idea to post the thread again for easier reading rather than searching as sometimes new comers want answers immediately…
The easy answer would have been to just to say yes (It happens like clockwork) but I think the subject is far more complex than that as it seems that Sundowning as it’s called can affect people with our illness at different times of the day, “in fact” a similar thing can also happen at the beginning of the day when the sun is rising, although the latter part of the day when the sun is setting seems to be the most significant time…
One thing I should explain is that here in Indonesia and some other parts of ‘Asia Sun Rise and Sunset’ occurs at about the same time everyday of the year, by 6am its broad daylight and by 6pm it’s getting dark unlike European countries when during the summer you have extended hours of sunlight from 4am-9pm which in itself could have some significance as to when a person starts to feel the effects of Sundowning?
But how does it make me feel: I think the best way I could describe it is to say that it causes a similar feeling that I can still remember after having had a nervous breakdown some years ago that at the time resulted in extremely deep depression.
For me it normally starts at around 3-4pm when I start to feel very lethargic and just seem to be wandering around the house utterly lost in my own world mumbling to myself or sitting in a chair drifting into daydreams (in fact my dear wife Sumi says she can now tell what time of day it is without looking at the clock) I fell as though the end of day is trying to drain every last bit of energy out of my body, all my limbs become extremely weak and I find it very difficult even to go for our walk but still go in a effort to ward off the Sundowning effect, I can become incredibly short tempered and loose all sense of rationality and sometimes become verbally aggressive and argumentative, you feel as though the whole world is against you and that whatever you say or do is wrong so I don’t like to be posed any questions at this time of day not even (what do you want for dinner) and I certainly don’t like to have any visitors at this time not unless they want their heads bitten off as my mind is at a total loss of any comprehension, all I want is to have my dear wife by my side but she now realizes that it’s best to talk to me very soothingly and I’m sure that she now just agrees with everything I say in an effort to keep me calm and also makes sure the house is kept peaceful without any excessive noise to further confuse my mind (Bless her as she has so much patients with me) as I start to feel as though I have the whole weight of the world’s problems upon my shoulders and everything becomes a effort so much so that my wife now has to help me bathe and get dressed as I’m so agitated and shaky…
So there is nothing that actually triggers the Sundowning apart from the setting of the sun as it descends towards the horizon which makes it feel as though its automatically starting by itself, but if it’s not handled with sensitivity then there could be untoward repercussions, also I should add that not everyday is the same as some can be worse than others and sometimes I can go for a few days without feeling any effects of Sundowning and the other strange thing is that even the weather conditions at the end of day can have some influence if its overcast I feel much better and responsive but if it’s a strong bright crimson sunset that we get out here then the draining affect starts much quicker, in fact, I get much the same affect when I go into a shop that has to brighter a neon, or flashing lighting…

Read of the reality when I’m Sundowning

This is written on actuality not supposition from when my dear wife Sumi and I went for our end of day walk it’s not just a one off situation or sensation for me it’s more of an occurrence day after day that totally shatters me!
It was just 4-30pm as the sun starts descending over the horizon when lethargy takes a grasp of me and the Sundowning affect ‘tolls the knell of my end of day’ so I’m writing this down trying to express the depths of my ‘true inner feelings’ at that exact moment in time…

My whole body aches as the muscles try to maintain some equilibrium, and as we go for our walk every faltering step I take being like that of wearing shoes made from concrete that’s slowly setting and intensifying in weight, which makes me weigh heavily on my walking stick and Sumi’s arm otherwise I feel I could just pass out from utter exhaustion as my mind is consumed in a dense obscure cloud of disorientation and bewilderment, my limbs are trembling so much I don’t know what to do with them to ease the tremor… my vision has become blurred as my eyes feel heavy wanting to sleep and escape from the sun’s setting draining sensation, so Sumi tries talking to me to take my mind of the horizon as my eyes have become mesmerized following the sun’s descent and harsh rays… but I can’t comprehend what she’s saying, I try to reply but any form of words and speech are held tight within me so all I do is mumble something incoherent which then makes me frustrated and I become really irritated and tetchy with her, the slightest little noise is more like thunderbolts slamming into my ears and making me very anxious and extremely jumpy…

The further the sun sinks away… the further I go into despair of doom and gloom… and sometimes it gets me to the point of saying to Sumi: (I’ve had enough of this, maybe it would be better if it all ended now, and I did not wake up again) as I can almost sense death waiting round the corner taunting me when in this daily living hell of Sundowning, I can see the tears glistening and running down her cheeks as she holds on more tightly to me saying ‘please don’t speak like that’ but I seem to be oblivious to her own anguish as my whole being is so distraught by the time of day that I just want it to come to an end…

As I said those where my exact feelings made from notes one evening, but as I type them out the next morning I had little recollection of that moment in time… it’s as if it never existed… as this morning I feel a completely different person still full of determination and the spirit of fighting this terrible illness, but when Sundowning strikes it takes us into a completely different world of anxiety within dementia…

I will be very interested to know what others people’s observations are with Sundowning as it’s another part of the illness that doesn’t affect us all in the same way.

 

Please feel free to copy this to your friends or on your own Blog sites as it might help other people to better understand how Sundowning can affect a person who has any type of dementia…

 

Barry,

Living in Indonesia with mixed dementia, (Alzheimer’s LBD and Parkinson’s disease)

Some Sundowning Tips to ease the anxiety

“Sundowning” is a state of increased agitation, activity and negative behaviors, which can happen late in the day through the evening hours. It used to be thought that Sundowning was caused by the lowering light and shorter days. However, research now indicates that being overly tired may have more to do with Sundowning. Here are some suggestions on how to minimize the negative behaviors associated with Sundowning:
1)
Make sure that your Loved One is well rested: I know that this is easier said than done. It does help though if you can get your Loved One to take a nap just before their normal period of Sundowning. If they cannot or will not nap, an hour quiet time (reduced stimulation and activity) will work. Turn off the TV, turn on some soft music and then sit and do a quiet activity such as painting or sketching. Sit and talk quietly with you loved one for an hour as it can help to make them relaxed.
2)
Limit outings and activities to the morning hours: Generally the individual with Alzheimer’s disease is better able to tolerate outings, activities and increased stimulus during the earlier part of the day. Plan your trips to the grocery store, involvement with kids, visits to day care and so forth during the earlier part of the day. This should be followed with a time of decreased stimulus and quiet time to allow your Loved One to wind down and relax.
3)
Decrease the length and amount of stimulus: Even during the earlier part of the day the individual with Alzheimer’s disease can only tolerate so much stimulation and commotion. Take steps to eliminate over-stimulation such as television, children, and any noise making item, quick movements and many things going on at one time. Sometimes excessive stimulation cannot be avoided. When that happens, allow your Loved One to have a quiet area to retreat to.
4)
Identify and minimize physical discomfort: Other types of physical discomfort can also play a part in Sundowning. Hunger; being wet or soiled, feeling cold/hot and other sources of discomfort can increase agitation, especially in the late afternoon and early evening. Light snacking during the day can be helpful. Apples and other fruits can help replace lost energy – even if your Loved One is pacing back and forth, that does not mean they have an endless supply of energy. Make sure that your Loved One’s personal needs are attended to and that the climate is at a comfortable level.
5)
Identify and treat medical ailments: Many ailments can contribute to Sundowning and agitation. Arthritis can be one of the most common causes. An over-the-counter painkiller as recommended by your Loved One’s physician before the time of Sundowning might be of great benefit. Urinary Tract Infections, flu / colds, asthma, allergies and other conditions are all medical ailments that can contribute to Sundowning. It is always a good idea that when your Loved One first begins to exhibit Sundowning or when Sundowning becomes common to take them to the doctor to make sure that there is nothing ailing them.
6)
Be observant to possible causes: Many times there are triggers to agitation leading to Sundowning. I now find that the noise from a hand phone tone can affect me more when I’m Sundowning so It’s best to set the phone to just a vibrate mode. Provide your children with a separate area to play as quietly as possible. Mirrors can also become a trigger as well due to light reflections. Watching to see what is going on, what events are happening and who is present prior to Sundowning can help reveal some causes (and solutions).
Sometimes no matter what we do Sundowning will happen. If we cannot prevent it we can help lessen it or at least make it less unpleasant for our Loved Ones and those around them.
7)
Provide a private “time out” space for your Loved One:
8)
Keep the house as quiet as possible to avoid aggressive Sundowning episodes, turn off unneeded lights, turn off the TV/radios and either go to a quiet corner or go and sit outside for a moment but always be close at hand.
9)
Check with the doctor: If Sundowning is particularly troublesome; you may need some extra help with prescription medication. Talk with the doctor to let him know of the behaviors, time of day and how you’re Loved One is behaving before Sundowning. He may be able to help you by prescribing a medication to help ease the symptoms.
Medication is a last resort and may take several attempts with different drugs and doses to find the right one that will work for your Loved One.

If medication does not help, do not become discouraged, relay the information to the doctor and he may either adjust the dosing or change the medication.
10)
Keep things simple: Keep the surroundings as simple as possible. Be sure your Loved One’s walking paths are clear from clutter and obstacles. Low furniture such as coffee tables and footstools can make it difficult for your Loved One and become a source of frustration. Keep knickknacks to a minimum and the tops of tables, television shelves and other surfaces as clear as possible.
Mirrors and pictures can often become unfriendly visitors that the individual with Alzheimer’s disease cannot understand. Complicated, noisy appliances are also frustrating to them.
Avoid changing things once you have things simplified since changes of any kind can be extremely frustrating for someone who has dementia.

Maria Montessori and repeated questions

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“If we observe them closely, we notice that they do not listen to the answers given to them but simply keep repeating the questions. What seems to be an eager curiosity is in reality a means of keeping a person they need near at hand” – Maria Montessori 1914.

Maria Montessori was talking about children. However, this is equally true of older people living with dementia whose memory difficulties and problem solving makes them insecure and uncertain. And so they seek out attachment figures who make them feel secure and safe, calm the uncertainty and anxiety that memory loss provokes.

Othering and empathy

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Professor Simon Biggs from the University of Melbourne School of Social and Political Sciences spoke at the Better Practice Conference in Adelaide this week. He spoke about human rights and

old_and_young_2x2ageism in Australia. The human rights perspective has not been brought to bear on ageing much to date and this is especially true of aged care.

Several things struck me about his presentation. Firstly he spoke of “rights holders” and “duty bearers”. The older person is the rights holder and we are the duty bearers who have a duty to uphold or protect the person who holds the right. It made me think of the situation I have face in the past when families and others overwhelm the older person and essentially cajole them into going into aged care. This is a failure of our duty to uphold their right to agency, to choice. Even cognitive impairment does not take away a person’s right to agency, choice.

The other point he made was that we have difficulty with empathy for older people (and this especially true of our relationships with older people with dementia) and we “other ” them. We make them into an “other” who is different, not like “us”. Kitwood referred to the work of Martin Buber who spoke of an “I” “Thou” relationship in which the other person is not made into something different but is recognized as a subject, a person like me.  However, when we engage in “othering” we have difficulty with empathy, with recognizing elements of our own experience in the other person treat the person who is old, who has dementia as if they are not like us, have little in common with us, are essentially different to us.

I remember coming to grips with this problem in myself some years ago when I realised that I could not picture these older people as once young, once like me, smooth of face and strong of limb. I concentrated on trying to make this connection and it helped me to engage with the older person as a person with outlooks, perspectives, experiences and feelings like mine, hopes like mine.

Simon Biggs said that empathy is the antidote to othering. What do you think?