UnburdeneD

These types of interaction are described in Tom Kitwood's Dementia Reconsidered- the person comes first. They apply to family caregivers and professional carers, and they illustrate a part of the demands that are posed upon them. The interaction with the person with dementia will change throughout the journey, and we need to remember to respect their personhood and uniqueness at all times. Of course, this is a challenging task, so caregivers (both paid and informal) need to be supported in building the necessary skills.

Do you have any examples of these interactions from your experience? Please drop us a comment below.

Source:

Kitwood, T M. Dementia Reconsidered: The Person Comes First. Buckingham [England: Open University Press, 1997. Print.

Let’s start the new year with some mental health tips!

How many times have you caught yourself thinking ' I am not doing as much as I can' or 'I should be a better, more caring spouse, child, friend'?

I am sure it is one too many times because dementia can be unpredictable, fast-changing, complex.. it requires constant readjustment to new circumstances. This means that what worked yesterday, may not work today. It means that some days will be easier, and some will be more difficult.

All of this can bring about feelings of inadequacy and incompetency in family carers, on top of the feelings of guilt and self-blame. Additionally, they can harm our self-identity and shatter the image we have of ourselves. This is where positive affirmations can help us retain our positive-self image and break the pattern of negative thoughts triggered by stressful situations or changing circumstances.

The studies show that practising positive affirmations daily can help us with managing stress, maintaining our physical health and having a more optimistic outlook on life. They don't mean self-deception but simply reminding ourselves of all the brilliant things we are and we do daily.

It is a simple technique that isn't time-consuming and can be done at any time, and at any place. Affirmations can be practised in different ways:

🔹During meditation
🔹Through journaling
🔹As an immediate response to stressful situations.
🔹As written notes/ reminders.
🔹Using mobile applications.
🔹Talking to ourselves in the mirror.

As caregivers, it is essential to remind yourself of everything that you do and boost your sense of self-efficacy, which is related to your general well-being.

Do you practice affirmations? What are your experiences? Drop a comment below

Sources:
➡️https://positivepsychology.com/daily-affirmations/
➡️http://psychology.iresearchnet.com/
➡️https://www.sciencedirect.com/

Merry Christmas friends !

Christmas is a time for sharing and appreciating the ones who we value the most.

Share this with the person who deserves to read it💕

🧠Have you heard of the third most common type of dementia? 🧠

It is called Dementia with Lewy bodies and it is named after the clumps of protein that accumulate in formations called Lewy bodies.

You can read more about this type of dementia on the following slides.
Comment below if you, or somebody you know lives with this type of dementia.

Image sources:

➡️Lewybody.org

➡️https://alzheimersnewstoday.com

Text sources:

➡️National Institute of Aging

➡️NHS UK

➡️University College London- The many faces of dementia

➡️Science direct

➡️Connors MH, Quinto L, McKeith I, Brodaty H, Allan L, Bamford C, Thomas A, Taylor John-P, O’Brien JT (2018). Non-pharmacological interventions for Lewy body dementia: a systematic review.

➡️Epidemiology, pathology, and pathogenesis of dementia with Lewy bodies by Caitlin S Latimer, MD, PhD and Thomas J Montine, MD, PhD

Mental health problems are very common in people who live with dementia and some of them,as apathy and depression, are noticed even before the cognitive decline. Some of the reasons why mental health problems go "hand-in-hand" with dementia are:

▫️The structural changes in the brain caused by dementia's pathology.

▫️Pain and discomfort.

▫️Cognitive decline, confusion, and memory loss leading to the inability to recognize one's surroundings and close ones and feeling lost and scared.

▫️Inability to communicate one's feelings, worries, and pains.

▫️Inability to engage in everyday professional and social activities and hobbies.

▫️Change of surroundings due to placement in a nursing home or moving into a care partner's home.

▫️Side effects of medication.

▫️Loneliness and passivity.

▫️Feelings of losing oneself and one's identity.

If you notice these kinds of symptoms in a loved one, even if not diagnosed with dementia, these are general advice for the next steps:

▫️Inform your physician about these changes. They will refer you to the relevant departments and suggest the next steps. There are different types of pharmacological and non-pharmacological treatments for mental health problems and the sooner they are addressed, the better.

▫️Ask and listen: pain is relieved when shared. You can start by: "I've noticed that you have stopped going out for a walk in the morning. Is there anything bothering you?". Be there and listen actively. If the person has a hard time communicating their feelings, try to verbalize them by catching non-verbal cues.

▫️Reassure "I am sure that you are scared, but I will be here for everything that you need."

▫️Distract: this is usually recommended for when a person is experiencing a hallucination or has delusive thoughts. Don't argue. Try to distract them with an activity or by moving them to another room.

▫️Create a calm atmosphere, where there will be no triggers, loud noises, or disturbing lighting. Play some calm music.

▫️Engage in an activity.

Sources: Onyike C. U. (2016). Psychiatric Aspects of Dementia
https://www.alzheimers.org.uk/
alz.org

Today we are looking into the most common types of dementias. This is just a general overview and in our future posts, we will present different types of dementia in more detail, including ones that are not covered here.

The pie chart is just a visual aid that represents the prevalence of the different types of dementia which can vary. For example, Alzheimer’s disease can account up to 80% of dementias, and there are also other, rare types that can account for less than 5% of the cases. This is just to give us a better picture of the distribution of the main causes of dementia.

Explanation of less familiar terms:

🧠Amnesia: memory loss which can be retrograde (inability to recall old memories) or anterograde (the ability to make new memories).

🧠Apraxia: inability to perform activities that require voluntary movement.

🧠Aphasia: impaired communication which can be expressive (inability to produce speech) or receptive (inability to understand speech).

🧠Agnosia: inability to receive or correctly understand information from the senses of hearing, smell, taste, touch, and vision.

🧠Apathy: lack of motivation to do anything or interest in what is going on around you.

▫️Disclaimer: The distinction between Lewy Body dementia and Parkinson's disease dementia is rather conceptual and for diagnostic and practical purposes.

🧠Dementia with Lewy Bodies is diagnosed if the dementia symptoms appear before or at the same time as the movement problems characteristic of Parkinson's disease.

🧠Parkinson's disease dementia is diagnosed if the movement problems occur a year or more before the dementia symptoms.

Did you find this post useful? What else would you like to know about the different types of dementia? Drop a comment!

A diagnosis of dementia is rather difficult to accept and to process. Generally, there are a lot of stigmas, misinformation, and negative associations with dementia which don't really facilitate the process of acceptance. We must, however, admit that it is a delicate condition that seriously affects one's life and wellbeing and the occurrence of "difficult" emotions upon diagnosis is understandable. "This can't be happening!"! "Why me?", "My life is over", "It's not fair" are all thoughts deriving from the shock, anger, anxiety, fear, sadness felt when a diagnosis of "dementia" is enclosed. After the initial shock passes, a feeling of deep sadness and grief can overwhelm you, leading to social isolation and withdrawal from everyday activities.

What to do with these feelings? Whatever you feel, always remember these words: "It is okay!". Our emotions are our reaction to the situations and the meaning we assign to them, and once diagnosed with dementia, you are faced with a life-altering situation that can cause many different feelings. Give yourself time to process your feelings. There is no right way to react to a diagnosis, there is only your way and if your way is screaming out loud, crying, taking a few days for yourself, going for a run..give yourself that. Feelings are energy and they cannot just disappear from our brains and bodies and that is why they need to be acknowledged as they are. There isn't a bad feeling, or a bad reaction as long as nobody is in danger.

Throughout our life, we are very often taught how some feelings are "good" and others are "bad" or it is inappropriate to feel and express them, but that is not true, there are only two types of feelings: the ones you feel and the ones you don't feel. Everything you feel is there for a reason, so start by taking the time to let it be, accept the sadness, grieve the grief, talk about the anger and frustration, but don't suppress or try to hide them, because..where would they go?
What you resist, persists.
.to be continued in part II

In our last post we talked about “dementia grief” and how it can be emphasized during the holidays. Today we will look into a couple of ways for coping with these feelings.

•The first step to coping with these feelings is, paradoxically, accepting them! They are a natural reaction of the difficult process you are going through, and they have their function. Research shows that anticipatory grief can be connected to finding meaning and solace. It can also have a preparatory function for what is to come and facilitate adjustment and acceptance of death. Bereavement of a person, while they are still alive, can lead to feelings of guilt and self-resentment, and even distancing of them. So, however hard it may be, next time when you feel sad, try to “speak to your sadness” saying “I acknowledge you and I understand that you are a part of this very difficult and complicated process”, instead of denying what you feel. You can be amazed by how a feeling can dissolve once acknowledged.

•Take a little time for yourself, to come back to your feelings, to do things you enjoy, that make you happy and satisfied or even just to take a break from everyday life. Don’t put pressure on yourself to feel festive or to take part in activities that are “too much”. Listen to your emotions. Does that family lunch feel as too big of a hassle? Skip it. Is decorating the house too exhausting? Don’t do it. It is okay.

•Ask for support- reach out to family and friends or mental health professionals. Sometimes, just venting and talking about your feelings can open the way towards their acceptance and ease the burden. Don’t be afraid to ask for help. Social support is found as one of the biggest protective factors from depression and psychological burden.

•Express your feelings- journaling or engaging with creative activities are a great way to express what you feel. If you are new to journaling, start simple: with one sentence even, writing down your feelings can feel weird at the beginning. As time goes by, this way of self-expression will become more natural to you and you will start to feel the benefits.

If you, however, find these feelings overwhelming and if they start to impair your everyday functioning, we strongly encourage you to talk to a mental health professional.

Remember the take-home message!

First of all, and most important-it’s okay! Grief is an organic part of caring for a loved one with dementia, and it is so unique that there is a special term for it: “dementia grief”. In some of our future posts, we will discuss dementia grief in more details, for now it is important to understand and differentiate between the basic concepts:

“ Anticipatory grief” or “pre-death grief” is grieving and adapting to a loss before it occurs.

“Ambiguous Grief” is simply grieving someone who is still alive. Their physical being is still there, but emotionally or mentally they are absent.

Dementia grief is the caregivers physical and emotional reaction to the perceived losses in their loved one with dementia. Dementia caregivers can go through the whole grieving process (denial, anger, bargaining, depression, acceptance) with each milestone of the disease. This process can include emotions as: anxiety, loneliness, disappointment, anger, guilt, exhaustion.

The holidays can be emotionally tough time when you are going through the process of dementia grief and there can be quite a few reasons for that:

1. Memories: the holidays can easily bring back memories of celebrations with your loved one and memories can be painful when you are grieving.
2. Stress: however joyful may the holidays be, there is surely a lot of stress around them whether it is the shopping, the preparations, the organizing, the decorating, trying to catch up with family. It is all stressful and exhausting and it can only add up to the existing stress and exhaustion of caregivers and increase the intensity of unpleasant feelings.
3. Loneliness. This year, feelings of loneliness are very real and relevant. Being unable to be with family and friends during the holidays, especially if you are used to celebrating within a big circle of people can lead to feelings of loneliness and sadness.

To sum up, the festive period can be emotionally challenging for dementia caregivers and feeling sad can also lead to feeling of guilt.

In our next post we will talk more about coping with these feelings.
The main message to take from this one is: It is okay to feel what you feel!

Merry Christmas!