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For carers and relatives of people with fronto-temporal Happy New Year! Sorry for the delay in sending this latest edition of the newsletter – we realise it’s been a while but we wanted to be able to confirm a date for the next meeting before getting in touch. Thanks to all of you who attended our meeting on the 25th October. In this meeting Sarah Page gave an informative talk on ‘Practical problem solving with Frontotemporal and Semantic dementia’. Sarah is well known to us as a carer but she is also an occupational therapist and this mixed role makes her knowledge invaluable and her talk truly useful. For those of you who weren’t able to attend the meeting we’ve included a short summary of the key points in this newsletter. We hope you find the information useful. If you have any unanswered questions or would like some more information on FTD or SD, please try the website, where you can find previous editions of the newsletter, summaries of other talks, and other useful information and links: ‘Practical problem solving with Frontotemporal and Semantic dementia’ Sarah Page, Occupational Therapist, Woodlands community hospital The role of occupational therapists People often underestimate Occupational therapists (OTs) and think they are simply “providers of toilet seats”. OTs have a holistic approach to patient care ensuring that it is the person rather than the illness who is at the centre of care. They recognise differences between individuals and strive to meet individualised needs. Woodlands hospital At Woodlands hospital Sarah works in a multidisciplinary team with physiotherapists, nurses, social workers, charities and psychiatrists like Gillian Moss (who spoke at the carers’ group in August 2010). It is an inpatient assessment centre for patients with dementia. People tend to get admitted at ‘critical’ periods, when their relatives are struggling to look after them and it has becomes necessary to admit them under the Mental Health Act. There are many different reasons for patients to come in to the hospital. Some problems can be solved quickly and the patient can be discharged (e.g. a urinary tract infection) whereas other difficulties are not so easily solved and patients may stay for long periods of time. The importance of experiencing meaningful and purposeful activity provision Activities such as cooking, gardening, reading etc. are utilised therapeutically by OTs. These activities are used to help assess patients’ cognitive abilities and help OTs produce care plans. It is important to remember that people can engage in activities at many different levels. For example, during a cooking session one patient may be able to read a recipe, whereas another may be able to stir the mixture, and another might simply be watching and drinking tea. In doing this, they are all involved in the activity, just at different levels. Activities need to be tailored to the individuals’ concentration span and interests. At Woodlands hospital, OTs also use ‘Life Story Books’ in order to find out as much information about someone’s life from their relatives and use this information to adapt activities to their previous hobbies etc. Challenging behaviour Behavioural, social and emotional changes are key features in FTD and SD and therefore challenging behaviours may arise. Challenging behaviours can be very embarrassing, and difficult to cope with, particularly when there are bystanders. It is important to think about what the challenging behaviour means and to try and take a ‘step back’ to see if there are any obvious triggers. Sometimes there may be a way of diffusing the situation or dealing with the behaviour, but this will not always be the case. People often feel like they have to manage on their own but there is help and support out there. It is therefore important for carers to share their experiences and to try new ways of dealing with the behaviour. The next part of the meeting was an open discussion, allowing carers to pass on the different ways they deal with various problems that their relatives have. It is important to note that the patients Sarah sees in Woodlands may have many of these problems but that many of your loved ones may only have a couple, or none at all, and may never experience them. Not all of these solutions will be appropriate for your loved one, but we learn though trial and error, and often a huge amount of patience is required! It is important to use your expertise to work out the best solution for you and them. It is also crucial to realise that other things may have an effect on these behaviours, such as other illnesses, so looking at the whole person, and how different problems interact, is very important when attempting to reduce challenging behaviours. Medications may be used for some of the problems listed below but these can only treat the symptoms and it is important to balance activities and medications to get the best results. 1) Sleeping – poor sleep pattern (too much or too little) Reasons for poor sleeping are vast but some possible solutions are: a. Using sleep medications. b. More stimulation during the day. c. Observing food intake before bed. Making sure he/she is not hungry or thirsty. Reducing high energy/caffeine food or drinks. d. Creating a routine in the evening ensuring a regular bedtime. e. Find out if he/she is comfortable in bed. f. Does he/she feel safe and secure at bedtime (e.g. in the darkness) if not resolve individual factors such as turning a light on or for locking doors (see 2 below). g. Problems may be due to continence problems (for solutions see 3 ‘inappropriate toileting’ h. If patients sleep too much, giving them caffeine during the day may help. This could be a repetitive, stereotyped, behaviour. If this is the case you may need to try and change the routine gradually. If it seems to be due to them feeling unsafe/unsecure possible solutions are to: a. Explain patiently that you have locked the doors. b. Take them with you when you lock the doors so they can see that it really has been done, or possibly letting them lock the doors themselves, under supervision. c. Having a poster / checklist next to the door with the door locking routine. 3) Inappropriate toileting – places, times, frequency, verbalisation Causes of the behaviour may be as simple as a urinary tract infection or a chest infection and it is therefore important to rule out other causes, by going to the doctor, before resorting to other methods. Some other ways of dealing with the problem are as follows: a. You may be able to get a ‘radar key’ and use it to go into disabled toilets with them. b. Using continence pads, however, they are not particularly comfortable and people may take c. Ask the person why they are toileting inappropriately. d. Observe what is happening before and after the inappropriate behaviour – look for ‘triggers’. e. Utilise times and routines e.g. allowing them an hour in the morning to have the bathroom to People with FTD often lose the ability to ‘look ahead’ and can have little motivation to engage with tasks. There are various ways of trying to engage with them or manage this poor motivation: a. In Woodlands, they use the ‘Life story books’, mentioned earlier, to find out patients’ interests and to modify activities to these interests. As carers you could use a similar tactic, tailoring activities to your relative’s interests. b. If they don’t want to go somewhere, e.g. a hospital appointment, tell them they’re going to somewhere they enjoy going and have a ‘stop off’ on the way. A little flexibility with the truth can be helpful. c. Often people respond well to music or movies. d. Giving them extra caffeine or energy drinks. e. Using day care centres if they run in your area. These will involve doing activities that you may struggle to engage them with at home 5) Washing and dressing – poor hygiene In FTD & SD, as mentioned above, people often have reduced motivation or may not understand the social importance of personal hygiene and therefore will not wash. Sometimes SD patients may not understand the activity of washing and may be fearful of the water. Conversely, occasionally patients will wash repetitively in a stereotyped fashion. Generally medications that are used in ‘obsessive compulsive disorder’ are not used in old age psychiatry, however, some SSRIs such as Citalopram can help with these behaviours. Some suggestions of ways of handling problems with washing and dressing are: a. Using flushable wipes if they refuse to shower/bathe. b. Using routines. c. Getting help – if they don’t like you helping them wash see if they’d prefer help from another d. Using their own belongings such as their brush, razor etc., during a hospital stay or holiday e. If they do not want to change their clothes: Immediately put the clothes in the wash when they go to bed a. Crushing pills – Individual circumstances are important here: as discussed in our August 2010 meeting, if this is in the patients’ best interests and can be done safely then it may be acceptable. b. Disguising the taste with something sweet e.g. ice-cream or yoghurt. c. Get someone else, who they respect, to ask them to take the medication. d. If possible, get a nurse or another figure of authority to give them the medication. Impaired communication can arise for an array of different reasons and these are very different for patients with SD compared to FTD. In FTD impaired communication is often due to poor motivation and lack of generation. Some ways of dealing with poor motivation are outlined above (4). Comprehension is the predominant problem in SD so actually understanding what words, pictures or objects themselves mean or are used for is impaired. They may also use the wrong words for things. This makes communication very difficult, there are however certain strategies: a. Expanding on what you are saying, putting everything in context and in a logical sequence for example, instead of saying “where are your glasses?” say “where are the glasses that you use for reading?”. b. Using the words he/she does consistently, as they can probably understand these better than c. Keeping items in the same places can help people with SD retain knowledge of what that Often patients with FTD may develop a ‘sweet tooth’, cram food into their mouths, or over-eat, sometimes they may even eat from others’ plates. People with SD may reduce what they eat to very few things that they still recognise. In order to ensure they get the required nutrients and remain healthy there are certain things you can do: a. Negotiate who cooks, involve them in cooking b. Look for what may be causing the problem e.g. do they only like certain textures of food? This c. Mixing healthy foods that they may refuse with unhealthy foods that they like. Although this isn’t ideal it’s important to not tackle too much at once. If this does work it may be worth trying to reduce the unhealthy foods and increase the healthy foods gradually. d. Using routine such as only allowing desert if they have eaten dinner or setting eating times. This may also help when people are refusing to eat. e. Removing temptation – throw away unhealthy foods from the house or lock them away. f. If they are eating from others’ plates, one past suggestion has been to put a line of tape around their plate and tell them that they are only allowed food from within that area. g. If they are refusing to eat, they may be persuaded to drink protein rich drinks like milkshakes. h. In Woodlands they may bring out table cloths, put on music, put cooking utensils on show and make sure the food smell wafts through the ward to encourage people to eat. Similarly, having friends come for dinner may encourage your relative to eat in a social situation. i. If the difficulty is a physical problem you may need input from a speech and language therapist or in extreme cases a PEG feeding tube may be required. Important points Don’t forget about the person behind the illness and their history. It is important to use their strengths rather than just reacting to their weaknesses. When challenging behaviours occur use strategies. If something works, and it doesn’t pose a safety risk, keep doing it!


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