Sheila is a registered nurse who has worked in Aged Care assisted living facilities (long-term stay homes for elders). She is currently working in an acute hospital where caring for patients with dementia is an everyday occurrence. She has interacted extensively with several dementia patients as part of her professional work. In this interview, she uses her professional experiences to share tips that can be used by family caregivers looking after persons with dementia in a home setting. [note]
Dementia Care Notes: As someone who has been working with patients with dementia, you must have often encountered upset and agitated patients. Please describe a couple of such experiences and how you and your colleagues resolved them.
Sheila: In my experience, when persons with dementia are admitted to a hospital for an acute medical condition, it is not uncommon for them to occasionally become agitated. This also happens in “aged care” facilities, where patients have moved in for long-term assisted living care. Sometimes this agitation is related to simple things like the patient not being able to find the toilet. Sometimes they know that they are not at their usual place, and hence have a desire to leave.
..a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost
Also, such agitation can happen even to patients living at home, and such a desire to “go home” (even though they are already at home) may be related to their mind being in a different chronological time in their history. For example, a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost.
In hospitals, patients often have to share a room with other patients, and they may not like the people they share the room with, or others may come and invade their space or touch their things etc. There are many challenges of managing patients with dementia in a group setting. There is a lot of activity because of people coming and going, and conversations happening around them, which their mind is trying to make sense of and often interweaving into their own thoughts. In “aged care facilities”, where we strive to create a home away from home, persons with dementia may share a room with one other person for company or have a room on their own, which is a lot nicer for the patient.
In both “aged care” facilities and hospitals, we try to keep the environment quieter and calmer to reduce episodes of agitation. We are better at creating a calm environment at “aged care” facilities, than we are in hospital where there is always a lot happening because the medical problems being treated require constant attention and action.
It really would be ideal to try and resolve health issues of patients in their own familiar surroundings with their own doctor who has a relationship with them. Home care, therefore, is preferable if the family can handle it. This is not always possible, and if patients do need admission to a hospital for some medical problem, then it is often best if the family members can spend a lot of time visiting, and during the visit, take their loved one away from the room to a quieter area for a spell.
When a patient gets agitated, the nurses try to assess the cause of the agitation. Do the patients need to go to the toilet? Do they need to have a drink or a snack? Has someone annoyed them? Is there too much activity or noise that is causing the patient’s agitation? Is it related to memories, for example, they feel they have to get to work, or go do the shopping, or go home? Are they in pain– a simple headache may lead to agitated behavior.
Once the cause is established and the patient’s basic comfort needs have been met, then if the agitation persists, we try to use distraction techniques.
We try general soothing conversation using a calm tone, low pitch and slower pace. We point out pictures in a mag or in photo albums and elicit conversation. We may ask simple questions requiring simple answers like ‘yes’ or ‘no’. We can elaborate and suggest a response, just to keep the conversation going, and we also take the stress out of them struggling to find an appropriate answer. We might make them a cup of tea and sit with them for a chat. We might get them singing or play some olden-days cheerful but gentle songs. We play simple children’s games with them, give them something to cuddle or just hold their hand stroking it gently. We might get their loved ones on the telephone to speak with them — this often helps to calm them down– the promise of a visit ‘later’. We might take them for a gentle slow paced walk away from their area.
If simple measures don’t work, we may use medication.
If patients are aggressive, we might just leave them alone in a safe environment and observe them from a distance. With time sometimes, the aggression may resolve. We may get another staff member to approach them, as sometimes for a while you become the ‘bad guy’ or the cause of their frustration.
Note that, to be effective while helping a patient, we need to know enough about them. Persons with dementia might not be able to tell us what their age is or what their profession used to be, or what their family members’ names are. To be able to care for them in an “aged care” or hospital setting, it helps enormously to have some background information when interacting with patients with dementia. This helps us manage their agitation better. Fortunately for home caregivers, they typically know enough about the patient.
Each case is different and the challenges faced by the carers depend on what area of the brain is affected and what ability is lost.
One important thing I’d like to emphasize is that we have to separate the person from the disease, so that we don’t lose sight of them as individuals. Each case is different and the challenges faced by the carers depend on what area of the brain is affected and what ability is lost.
Dementia Care Notes: Please share some tips about possible triggers.
Sheila: Some triggers for agitation may be needing to go to the toilet, can’t find the toilet, needing a drink or food, too much noise, pain/headache, something on T.V. if that is playing in the background, the tone of our voice, reacting to our impatience, feeling cold/or hot.
The time of the day can be a trigger, often at sunset (this is called ‘sundowners syndrome’) probably because in the past they had to get things ready for the family coming home, or had to get home by a certain time. Sundowning is managed best by medication, as they remain agitated till it gets dark.
Sometimes agitation is just related to memories that come up– ‘got to go to the bank’, ‘got to go to the shops’, ‘got to get the car fixed’, ‘got to get the crop harvested’ etc.
Another trigger may be related to pain, or being constipated, or if the symptoms have worsened over a few days it may be related to a urine infection or other health problems.
Dementia Care Notes: Sometimes, patients get into a sort of “loop” where they keep repeating a demand or remain stuck in an emotional pattern even when the “trigger” is resolved. Please suggest how to handle this.
Sheila: If the behavior is repetitive questions, first establish that they don’t need to go out to the toilet or need a drink or are free from pain. If it still persists, then you don’t have to become frustrated by feeling that you have to answer every time; it is just a behavior, develop a bit of a deaf ear. Involve them in some meaningful activity.
They may be acting repetitive because they are bored. If you are getting a meal ready, then give them a simple chore like peeling vegetables or shelling peas or setting the table(unbreakable dishes are a good idea, like thalis).
As a last resort, medication might be an option.
Dementia Care Notes: Please give some examples of changes we can make in our homes to reduce the chances of patients getting agitated, or wandering out, or harming themselves.
Sheila: Keep the temperature comfortable.
A dark mat (black or dark brown) at the front door often works to turn them back, because they can’t make out if it is a hole on the floor, or how to cross it.
Reduce the auditory and sensory stimulation. For example, don’t have the T.V. blaring loudly in the background, or have them in a room where children are running around fighting or playing noisily. Keep the environment calm, with adequate but not glaring lighting. The T.V. news is often distressing as it usually contains unpleasant, anxiety-producing negative content about wars or thieves etc. Nature shows or travel documentaries or children’s shows are often good distraction for a short while.
A dark mat (black or dark brown) at the front door often works to turn them back, because they can’t make out if it is a hole on the floor, or how to cross it.
A simple picture of a male/female and a toilet on the door of the toilet helps them locate the toilet if that is a problem.
You can also make some changes in the home to make it an uncluttered, safe environment, such as remove loose rugs/mats that they might trip or slip on.
Dementia Care Notes: Please suggest ways to keep patients engaged and active when we are busy with household chores and not able to sit down with patients for games or other activities. Please suggest activities that do not require continuous supervision, and would not frustrate them if they are alone.
Sheila: You generally can’t leave them alone for long unless they were accustomed to spending large amounts of time on their own listening to music or reading.
One good and simple idea is to have a rummage box, a bit like your grandmother’s sewing box, full of interesting bits of fabric, spools of thread, buttons, lace, and add other interesting things like colorful balls, small bells, costume jewellery etc. For men, you can have a box of nuts and bolts, small spanners, bits of wood, scraps of fabric etc.
Start them off picking up items and putting them on a table in front of them. Suggest they sort out the box or tidy up. Once they empty it out, they will often pack it up again— a few minutes of time is bought.
Instead of using a rummage box, we sometimes make a ‘fiddle mat’, which is easier to handle, and takes less space to play with. A fiddle mat is a small fabric place-mat to which we attach objects of the sort we may have kept in a rummage box. For example, we stitch on things like zippers, ribbon tied in a bow (which they can undo and fiddle with), colorful buttons, bells, pieces of fabric, things from their past that hold memories like bobbins( thread reels), bits of knitting or crochet etc. Patients often spend hours trying to get the objects off the mat or trying to ‘fix’ it. Such a mat would be simple to make at home, too.
Some people with dementia often rummage through drawers. They will pull out all their clothes and pack them away in bags as if getting ready to leave. You can have drawers they can rummage through without upsetting you, and just put everything back when they’ve lost interest later. Try not to scold them, or it will backfire on you and just make them agitated. I’d suggest you keep their everyday clothes in another area, and just let them have items in their drawers that won’t upset you if they mess it all up.
In the “aged care” or hospital setting, nurses will often take the patients with them when they are doing routine tasks like restocking cupboards etc. While the nurses are tackling the tasks, they give the patients something simple to hold or ask them for help with tasks like folding cloths.
You can do things like that at home, too. If you are doing laundry, have them sitting nearby (like you would have done with your kids or grandkids) and give them pegs to fiddle with or some folding of simple items. Again, don’t expect a task to be completed as they often lose their train of thought and can’t concentrate for long periods. Remember that you are giving them something to do to keep them occupied and happy while you are doing your own work; you are not giving them the task in order to get it completed perfectly.
If they are strong on their feet they can help you carry items and walk along with you.
Everyone wants to be useful. It would be pretty scary especially in the early stages of dementia to be aware that you were losing your mind and not being able to recognize everyday items and people.
Dementia Care Notes: Caregivers would love to spend quality time with the patients, but don’t always know how to. Please share what sort of joint games/ activities you have found patients enjoying with their caregivers.
Sheila: Some activities you could try:
Armchair exercises: Stand/sit in front of your loved one and ask them to mimic your exercises. Raise your arms over your head, then lower them out to the side. Raise your arms above your head, then touch your shoulders with your fingertips. Bend your head from one side to the other, up and down, side to side etc. raise your legs out in front, then back down. Rotate your ankles, and so on– you get the picture. Make up your own routine and keep it simple.
If they liked to paint when they were young, get some poster paints/crayons or colored pencils and a scrap book or children’s’ coloring-in books. Even if they were never too interested in painting, they will often participate and produce meaningful pictures.
Look through photo albums, talking about the people and places.
Make scrapbooks of comforting pictures. Patients can help cut out pictures and glue them down. When made up, these scrapbooks are good to look at and chat about. Fill the scrapbooks with large pictures of flowers, or scenery or animals and birds, or even household items or festivals. You can glue pieces of fabric down– choose colorful patterns or fabrics with texture that they can touch and feel.
In our “aged care” setting and in hospitals, our patients often like walking around the corridors looking at the pictures on the walls, pictures of sceneries and birds, or framed embroidery or tapestry. We always stop and reflect on the picture and have a gentle conversation about it.
If you take them for a drive, go somewhere not too stimulating. Avoid noisy shops, etc. A peaceful park would be a good option. Large family gatherings can be overwhelming after the first few hugs.
Watching happy old movies may be okay. They might fall asleep during it or walk away. Just be guided by what mood they are in.
If you take them for a drive, go somewhere not too stimulating. Avoid noisy shops, etc. A peaceful park would be a good option. Large family gatherings can be overwhelming after the first few hugs.
A soft toy or baby doll might be of comfort, especially to the ladies.
Stroking pets (if they are fond of pets) is comforting. You can always get friends to bring a calm pet over.
Asking family or friends to telephone or visit one at a time, also breaks up the day.
Dementia Care Notes: Please suggest which activity to try out, and when. Please tell us how to know how much activity is good, and when it becomes over-stimulation.
Sheila: Do activities when they are at their best/ most alert.
Think of how you would entertain a toddler at home. Similarly, the attention span of persons with dementia is limited and their ability is often limited, so keep games simple. Matching cards/pictures, playing snakes and ladders, try any children’s’ games and see what they are able to do. You will know they’ve had enough if they become restless or fall asleep.
Intersperse activities with walks. Walking in the garden is good. Point out flowers and trees on the way. Keep an easy social chitchat going even if they don’t reply. Ask simple questions on and off, and answer your own question if they’re having trouble answering.
It is better to have a daily routine. Get up around the same time, eat around the same time, and so on. Just swap the activities around every now and then.
Dementia Care Notes: Please share any other observations you have.
Sheila: I would suggest family carers try and get some time out for themselves every day just to go for a walk, or have coffee with a friend, or just do the shopping.
Friends are often willing to sit with your loved ones and read to them or talk with them, if they know what to do and what to say. If you are feeling stressed (just like you did when looking after your children when they were young), ask friends for help or time out. It is not dissimilar to minding a young child– just make sure they get to know your friend before you leave them alone with them.
It is not selfish to have time for yourself or admit you are feeling frustrated and stressed. You will feel a lot more loving if you can have some ‘me time’.
Your roles have swapped completely, and instead of having that parent you looked up to for advice, you now have a little child in an adult’s body. Some family members describe it as “living with a stranger”. If you are caring for your spouse, your husband or wife no longer recognizes you. It is recognized that carers go through a grieving process as the person they knew disappears for ever.
Go easy on yourselves. You are doing a wonderful service. Take time out so you can last the distance and feel good about yourself.
Thank you for this very informative set of tips, Sheila!
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Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.