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What To Do With People With Dementia

Annual Report To Parliament On Canada’s Dementia Strategy

How does a person with dementia see the world?

Each year the federal Minister of Health prepares a report to Parliament on the national dementia strategy.

The 2020 Report to Parliament shares a Canada-wide overview of some of the many dementia-related efforts underway across the country. This report highlights how many different organizations, including the federal government, are supporting the strategy’s national objectives and reflects the variety of those efforts.

Boredom And Dementia Leads To Challenging Behaviors

Many family members who care for a loved one living with dementia experience difficult behaviors. Examples are struggling to get the patient to cooperate with eating and bathing, as well as sundowning-related problems such as agitation, paranoia, repetitive speech, and increased confusion in the afternoon or evening hours.

In a lot of cases, these challenging behaviors are a direct result of the persons unchecked needs surrounding boredom and loneliness, which must be addressed in order to improve their quality of life. Lets review some ways to feed these emotional needs.

Adapting Games To Match Abilities

The challenge for Activity Coordinators is to find the right games to match the skills and interests of clients with the stage of dementia they are going through.

Adapting and modifying games for seniors is necessary for all sorts of different reasons. As well as for those living with dementia, games need to be modified for those who use wheelchairs and those with impaired vision or sensory loss.

So keep it simple you will know best how to modify games for your clients. Dont be hard on yourself, if something is not working out as desired, change course. When playing games, it is important not to over-estimate what your clients are capable of, the objective is to enjoy the activity and focus on the experience while connecting with others and/or learning a new skill. However, dont underestimate your clients either! Very often they will surprise you with their hidden abilities.

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Coma Work: An Example

Rosemary Clarke attended a course on coma work and found it to have amazing benefits in her caring role with her mother. In an article for the Journal of Dementia Care, Rosemary describes how she learnt to sit very close to her mother so she could talk into her ear. She would pay attention to what her mother might be doing, for example, she would be chewing or moving one finger a tiny bit or sighing. She would then focus on one of these activities and support her mother to go with that impulse, to give it its fullest expression. She would therefore encourage her chewing with thats good, you really chew it or thats fine, you chew it over.

Sometimes Rosemary would respond to her mothers moving finger by having a finger dance with her own index finger, talking to each other through applying pressure from the finger whether slow and soft or firm and persistent. All the time Rosemary would be giving verbal encouragement What an energetic/busy/strong finger!, This is lovely, our fingers are talking.

As a result of this approach, Rosemary describes how her mother started to speak more often than she had before, sometimes with words and sometimes with sounds. On one occasion, even before Rosemary had sat down beside her, she looked up and said hello darling .

Things Not To Say To Someone Living With Dementia

Why Do People With Dementia Wander?

It can be difficult to know what to say to someone diagnosed with dementia. Often they dont disclose their diagnosis in the early years so you can tell at times that something is not quite right. You dont know why they are different to how you have always known them and you dont want to guess or ask for fear of being wrong and offending your relative or friend. Likewise, if you have a friend who has been diagnosed with dementia it can be difficult to know what to say and how best to support them.

Dementia can affect an individual in various ways, depending what caused the dementia, what state of health the individual was in prior to the onset of the condition and how their brain is uniquely affected.

The author of this list, 20 Things Not to Say to Someone with Dementia, Kate Swaffer is living with dementia and makes some great points here.Kate has asked us to include the following when sharing her 20 point list.

If it is possible to positively impact the life of even one more person living with dementia, then it would not matter how many people without dementia disagreed with me.

Kate Swaffer recently wrote:

The development of this list has sometimes been taken the wrong way by family care partners. It was not written to upset or criticise care partners but to help them understand that a few changes to the way they are, when around people with dementia, might improve our experience of dementia and therefore make their job easier.

2. Dont tell us we are wrong.

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Alma And Silvias Story

Alma had been forgetful for years, but even after her family knew that Alzheimers disease was the cause of her forgetfulness, they never talked about what the future would bring. As time passed and the disease eroded Almas memory and ability to think and speak, she became less and less able to share her concerns and wishes with those close to her.

This made it hard for her daughter Silvia to know what Alma needed or wanted. When the doctors asked about feeding tubes or antibiotics to treat pneumonia, Silvia didnt know how to best reflect her mothers wishes. Her decisions had to be based on what she knew about her moms values, rather than on what Alma actually said she wanted.

Quality of life is an important issue when making healthcare decisions for people with dementia. For example, medicines are available that may delay or keep symptoms from becoming worse for a little while. Medicines also may help control some behavioral symptoms in people with mild-to-moderate Alzheimers disease.

However, some caregivers might not want drugs prescribed for people in the later stages of Alzheimers. They may believe that the persons quality of life is already so poor that the medicine is unlikely to make a difference. If the drug has serious side effects, they may be even more likely to decide against it.

Cooking Household Tasks And Gardening

You can keep or start cooking, as long as it is safe for you. If it becomes difficult, there are some small changes that can make things easier.

For example, you can:

  • ask someone to help you in the kitchen
  • try recipes that have fewer steps or ingredients
  • use pre-prepared ingredients such as ready-made
  • sauces or chopped vegetables.

Many jobs around the home also provide a good form of gentle exercise and can help you to keep physically active. These include:

  • doing housework for example, washing up, folding clothes or dusting
  • gardening for example, gently weeding the garden, maintaining houseplants, or growing herbs or flowers in window boxes.

You can ask someone to do these tasks with you if this makes them more enjoyable or easier.

Tip: It can be helpful to put out the things you need before starting a task so that you have a visual prompt for example, tools for gardening or ingredients for cooking.

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Theyre Not Wrong About Everything

Weve seen it many times: the person with dementia is almost completely ignored when they say something, whether its about their level of pain or what happened yesterday when their grandson came to visit. You cant always believe everything that you hear from someone with dementia, but give them the courtesy of allowing for the possibility that they might be correct periodically.

S For Communicating With Someone With Dementia

How to Talk to Someone With Dementia
  • Keep yourself in the persons eyeline, and try not to suddenly appear from the side or from behind
  • Speak clearly and in short sentences
  • If the person is struggling to recognise you, introduce yourself and tell them about the connection between you, for instance: Hello mum, its Julie and I have little Danny, your grandson with me.
  • Be reassuring look the person in the eye and smile
  • If a person with dementia is getting agitated, take yourself to another room for a few minutes before coming back in, calmly, and saying something like: Hello, Im back now, how lovely to see you.
  • Try not to correct the person if they get your name wrong or say something that isnt true this can lead to distress and frustration on all sides. Try to imagine how the person with dementia is feeling

Remember, not being recognised does not mean you are totally forgotten.

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Do Offer Assurance Often

Many times, people with dementia may experience feelings of isolation, fear, loneliness or confusion. They may not be able to express this in the right way and thus may wander off or keep saying that they want to go back home, especially if they are in a senior living facility. This is not the time to shut them out. Its a good idea to assure them that they are safe and in a good place.

If you are close enough, provide a comforting hug every once in a while and remind them that they are in a place that has their best interest at heart. Where possible, engage in exercise or take a walk as even light physical activity may help to reduce agitation, restlessness and anxiety.

Support For Staff Doing This Difficult Work

Being with people in the advanced stages of dementia is personally challenging and you will need support. Managers need to give time to their teams to discuss these difficult encounters but most importantly still to praise the effort and encourage the member of staff to try again in a different moment, the person with dementia might respond very differently.

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Support For Dementia Caregivers At The End Of Life

Caring for people with Alzheimers or other dementias at home can be demanding and stressful for the family caregiver. Depression is a problem for some family caregivers, as is fatigue, because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.

Many family members taking care of a person with advanced dementia at home feel relief when death happensfor themselves and for the person who died. It is important to realize such feelings are normal. Hospicewhether used at home or in a facility gives family caregivers needed support near the end of life, as well as help with their grief, both before and after their family member dies.

Dementia Is More Than Memory Loss

6 Things To Remember While Caring For People With Dementia ...

Memory loss is a classic dementia symptom. But some types of dementia, particularly frontotemporal dementia and Picks disease, manifest themselves as personality changes rather than memory loss. The symptoms depend on the areas of the brain that is affected by the disease. Even when memory loss is the most apparent symptom, the person with dementia is experiencing a neurological decline that can lead to a host of other issues. A patient may develop difficult behaviors and moods. For example, a prim and proper grandmother may begin to curse like a sailor. Or a formally trusting gentleman may come to believe that his family is plotting against him or experience other delusions and hallucinations. In the latest stages of most types of dementia, patients become unable to attend to activities of daily living independently. They may become non-communicative, unable to recognize loved ones and even unable to move about.

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Activities For Dementia Patients: 50 Tips And Ideas To Keep Patients With Dementia Engaged

The prevalence of Alzheimers disease and other types of dementia is on the rise, yet the cost of dementia care options continues to grow. For many, family caregiving becomes the most practical and cost-effective solution, at least for a time. Keeping dementia patients actively engaged in everyday activities and cognitively challenging tasks is beneficial for both body and mind and, in some cases, it can even slow the progression of the disease. Staying active and engaged can help to reduce dementia sleep problems, as well.

Weve put together a list of 50 tips and ideas for keeping dementia patients active and engaged through everyday activities, outings, cognitively challenging tasks, and social and emotional activities, many of which can be used throughout most of the stages of dementia. Youll also find a few helpful tips for selecting activities that are appropriate based on the patients interests, abilities, and other considerations.

Medical Complications Resulting In Death Of Dementia Patients

Although dementia itself is a fatal disease, it is common for dementia patients to die from other medical complications. These major medical events are typically a result of the underlying dementia symptoms. For instance, a person may die from an infection like aspiration pneumonia, which occurs as a result of swallowing difficulties, or a person may die from a blood clot in the lung as a result of being immobile and bedridden.

The simple fact that the late stages of dementia leave the patient extremely susceptible to infections and other diseases, can often make it difficult to determine what may cause their death. If they do survive any medical complications during the end-stage of dementia, the disease itself is fatal and will lead to death as well. Those with loved ones or family members who are in the late stages of dementia should focus on making their loved one as comfortable as possible and provide palliative care rather than aggressive medical treatment.

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Helping Someone With Everyday Tasks

In the early stages of dementia, many people are able to enjoy life in the same way as before their diagnosis.

But as symptoms get worse, the person may feel anxious, stressed and scared at not being able to remember things, follow conversations or concentrate.

It’s important to support the person to maintain skills, abilities and an active social life. This can also help how they feel about themselves.

Don’t Ask Other People Questions About Them While They’re Right There

Communicating with People Living with Dementia

The opposite of quizzing someone is this scenario: “Hi, Fred. So, Sue, how’s Fred been doing? How’s his memory? Is he having any pain? Do you think he’s sad? What does he want for lunch today?”

Consider this a gentle reminder to be intentional about directly asking the person with Alzheimer’s a few questions. If they are completely unable to answer, you can then check with a family member in a respectful way.

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Stage : Mild Cognitive Impairment

Clear cognitive problems begin to manifest in stage 3. A few signs of stage 3 dementia include:

  • Getting lost easily
  • Noticeably poor performance at work
  • Forgetting the names of family members and close friends
  • Difficulty retaining information read in a book or passage
  • Losing or misplacing important objects
  • Difficulty concentrating

Patients often start to experience mild to moderate anxiety as these symptoms increasingly interfere with day to day life. Patients who may be in this stage of dementia are encouraged to have a clinical interview with a clinician for proper diagnosis.

Social And Emotional Activities For Dementia Patients

  • Create a mystery bag. One of the most popular activities you can use is called Mystery Bag, or Stereognostic Bag.
  • What you need for this activity:

    • 10 pairs of wooden shapes such as cubes, rectangular cubes, prisms, spheres, and eggs
    • A cloth bag

    Start by spending a few moments having the person look and feel each shape.

    Have them observe the different forms each shape takes on when placed down on a different side. Once theyre familiar with the shapes, you can move on to activities that involve touch.

    Place the cubes and rectangular cubes inside the bag, and ask the person to reach in and feel one shape. As they pull the shape out of the bag, they verbally say whether the shape is a cube or a rectangle.

    You can also play a matching game with the person in your care by placing all of the wooden shapes in the bag, and have the person find matching pieces by feel. Repeat this process until all of the pieces have been paired.

    Placing the objects in the bag eliminates distractions and stimulates the sense of touch, while the matching process helps to strengthen cognitive function. Activities & Games for Dementia and Alzheimers Patients, Elizz Twitter:

  • Playing with dolls can help to fulfill needs for comfort and attachment. While individuals may have different views on the use of dolls and childrens toys with people with dementia, it is now widely recognized that dolls can offer a very powerful therapeutic benefit if used at the right time and in the right way.
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    Stage : Mild Dementia

    At this stage, individuals may start to become socially withdrawn and show changes in personality and mood. Denial of symptoms as a defense mechanism is commonly seen in stage 4. Behaviors to look for include:

    • Difficulty remembering things about one’s personal history
    • Disorientation
    • Difficulty recognizing faces and people

    In stage 4 dementia, individuals have no trouble recognizing familiar faces or traveling to familiar locations. However, patients in this stage will often avoid challenging situations in order to hide symptoms or prevent stress or anxiety.

    What Sorts Of Activities Are Most Effective

    Why People with Dementia Say No (And What to Do About it ...

    The following ideas may be used on a one-to-one basis and others may be suitable for small groups depending on their abilities. Some of the activities suggested are Montessori based, developed to promote and maintain existing skills.

    Some activities such as sorting, pairing, matching and puzzles should be offered once and then repeated twice during the week. Despite having poor recollection, people living with Alzheimer’s can still learn through practice and repetition.

    Most activities that require movement: grasping, pressing, pushing, gripping, extending, scooping and reaching are helpful in improving hand-eye coordination. These types of activities also provide sensory stimulation and promote well-being.

    If utensils or tools are to be used, make sure they are adapted to the needs of individuals. Supervision at all times is essential.

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