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Caregiver

Assistive Technology for Alzheimer’s and other Dementias

Submitted by Maria Jose Chaves on 09:44

We have seen and discussed apps and technological products designed to assist caregivers and the patient’s family, but what about products and software made specifically for the community of dementia patients? Is it a good idea to have and use assistive technology for Alzheimer’s and other Dementias?

They are often advertised as devices and software that help with the patient’s everyday living. For a disease that makes everyday a little more difficult any assistance is more than welcome. Assistive technology is thought to do exactly that, aid an individual affected by Alzheimer’s or any other dementia to perform a task they would otherwise be unable to accomplish. It is also thought to increase the safety of such task and not only the easiness with which it can be done.

Simple things like forgetting where you last left the keys, or not being able to remember when to take your medications are just a small example of a daily situation the person with dementia goes through. There are more hazardous examples that can be avoided or prevented by having assisted technology like leaving the gas unlit when cooking or getting a little lost around the neighborhood.

Tweetchat Recap: Breaking the Taboo over Incontinence

Submitted by Marie Gomez on 17:18

 Breaking the Taboo

This week’s #DMSHealth twitter chat tackled a sensitive topic: incontinence. All the participants boldly volunteered their opinions and experiences on incontinence products, how to help a dementia patient cope with incontinence, and how we all can help reduce stigma by talking more about it. We also discussed enuresis alarms, the many causes of incontinence, and Kegel exercises, among other things. There may have even been a mention of Sean Connery in there! Join us next Wednesday at 3pmEST for another great #DMSHealth chat!

DIY and hacks for caregivers - Twitter Chat Recap

Submitted by Marie Gomez on 10:21

This week's Twitter chat about DIY, tips and hacks for Caregivers was truly inspirational for all participants. We had guest host Martyn (@Zkidookreativ), a UK based Graphic Designer. martyn is also a full-time caregiver for his 87 year old mother, who is living with vascular dementia. He also created and manages the Caregiving Café forum.

A seasoned carer and designer, Martyn walked us through the creation of a sensory environment, easy activities to entertain and amuse patients with dementia (PWD), and the ins and outs of chair hockey.

If you or someone you know is looking after a PWD at home, take some time to read the transcript below, and let us know if these tips helped you.

Make sure to follow @DiscountMedSup on Twitter, and join us next Wednesday for another great Twitter chat!

Cope with Dementia: not an easy task

Submitted by Maria Jose Chaves on 15:53

Whether you are a patient, a relative, spouse, close friend, no one can tell you or make you see what it feels to face dementia. However when it happens we ask ourselves to do a very hard task and it is to cope with dementia. But, how do you do it, where do you start? There is all this mixture of sudden feelings, most of them confirming that terrible suspicion you had and now you have to gather yourself and face the unknown, sometimes feeling you are alone in this new struggle.

First let's get one thing clear, you are not alone.

Dementia affects thousands of people in your country, millions across the world, not only patients but those close to that person facing this difficult disease. Probably the number of support groups reach those same thousand numbers. You can find them everywhere, at your local church, on the closest clinic, at the care home, on the internet, on the phone, you name it. The only effort they ask of you is to reach out, and they will gladly offer their help no questions asked.

Optimizing Space for Dementia - Twitter Chat Recap

Submitted by Marie Gomez on 17:14

This week's Twitter chat about Optimizing Spaces for Dementia was a true goldmine of great advice, tips, and ideas. We had stellar guest host Romina Oliverio (@RominaOliverio): Dementia Consultant & Advocate, @SeeMeEffect Program Assistant and Writer.

 
We talked about how to modify every room in the house (living room, kitchen, bedroom, bathroom, garden) and we even discussed outside spaces such as work and shopping! There was an interesting debate on whether to leave snacks available, and many thoughts on sensory gardens and lighting.
 
If you or someone you know is looking after a PWD at home, take some time to read the transcript below, and let us know if these tips helped you.
 
Make sure to follow @DiscountMedSup on Twitter, and join us next Wednesday for another great Twitter chat!

Light and Dementia

Submitted by Mariela Miranda on 14:54

When someone in your family has been diagnosed with dementia and you become their caregiver, changes in your lifestyle are sure to come.  One of those changes is accommodating the physical space and surroundings to the needs of your loved one and his condition. Within physical space falls the category of light.  Lighting, and how proper it is, has a tremendous impact on both the patient and the caregiver.

Independence is something we need to enhance in our loved one with dementia. Giving them a sense of independence for as long as possible will ease the frustrations that come with the condition. However, if we want someone to be independent, they have to be able to see and get around properly and without any hassle.

Learning from Dementia

Submitted by Maria Jose Chaves on 13:44

learning dementia

When I personally witnessed dementia in a close loved one was with my grandfather but I was too young and ignorant of the situation at the time and my learning of dementia came years later when doing research for work and the articles I write on caregiving. I remember finding it a little amusing that my grandpa said to my dad how he reminded him of his son (him) as if my dad were an old distinguished friend coming to visit, and then my grandma correcting him saying “Eladio, that gentleman IS our son” and then both dad and grandpa having a laugh of the whole thing. Little did I know that he was already on the advanced stages of dementia. A couple of years later he had lost his speech and most of his bodily functions, but the entire family was sure to give him the best health care and a dignified death at home surrounded by those who loved him.

Being a writer of health articles and giving a special section of my day to caregiving research has made me come close to dementia several times a week. I have also had the opportunity of attending seminars dedicated to caregivers of Alzheimer’s patients. Facing the reality of this disease makes anyone appreciate life and their own healthy mind. I see dementia as a robbery of one’s most precious treasures, our own memories, those mental pictures that we hold close to our hearts. And then beyond that, the loss our own decision making, judgment and the ability to speak. On the later stages the body starts to fade away in what to me is an unfair departure from life.

Caregiving Wellness Twitter Chat Recap

Submitted by Marie Gomez on 13:01

caregiving-wellness

This week's Twitter chat about Caregiving Wellness was one of our most dynamic to date, thanks to guest host Kara Vanderpool (@Karavanderpool2). Kara is a caregiver and the author of the hilariously honest blog Caregiving Sucks.

We talked about looking after the caregiver in every aspect: physical, mental, spiritual, psychological. We also shared survival tips and humor, as well as blogs and resources to help caregivers look after themselves.

If you know a caregiver and want to know how you can help them or make their job easier, read the transcript below. And if you’re a caregiver yourself you will be chuckling along in no time!

Make sure to follow @DiscountMedSup on Twitter, and join us next Wednesday for another great Twitter chat!

D is for Dignity in Dementia Care

Submitted by Maria Jose Chaves on 10:38

d-is-for-dignity

Focusing on the person-centered care for a person with dementia (PWD) involves a large amount of personhood and spirituality, an empowerment which can only be achieved through dignity in dementia care. An individual living with dementia must not be seen as a “living death” as Ben Bano, a well respected social worker specialized in dementia and religion in the UK mentioned in a conference given back in 2012. It is a caregiver’s responsibility and part of being kind to others to help promote the personhood on a patient with advancing dementia. As Ben said in his speech, “through the prism of spirituality, even as mental and physical faculties decline, we can enable a person with dementia to ‘live life to the full’ and enjoy times of flourish and thriving.”

Part of being a witness of the blossoming steps, as small as they might be, is promoting that breakthrough by setting the right circumstances. Person-centered care, tears down that old philosophy of “one size fits all” in dementia care, by respecting and enhancing the PWD’s individuality or “personhood”. It involves a great understanding and meeting the “inner” needs of the PWD.

Any human, no matter their condition or disability has rights as a citizen that need to be respected. The “malignant social psychology” and the stigma behind the word “dementia” has stained the correct comprehension of what the disease is and how a PWD must be treated, with dignity and humanity. We can reverse this misinformed social cognition by creating awareness and reinforce the image of the person with dementia as someone who is capable to feel emotions, both positive and negative, and also share these feelings to those willing to be present in what often is a confusing and bewildering situation. This concept is what Tom Kitwood, a dementia researcher (he worked through the Bradford Dementia centre in the 1990’s in changing our perception in the way we see people with dementia), created as the term ¨personhood¨ to fight the stereotypes built by lack of information in society. Ben Bano explains this as “we see the person with dementia as a ‘living person’ rather than a ‘living death’.” he also adds, “a person with dementia is seen not just as an object of care, but as a source of wisdom and experience”.

Caregivers in Chronic Fatigue Syndrome

Submitted by Mariela Miranda on 11:14

chronic-fatigue

Chronic Fatigue Syndrome

Chronic Fatigue Syndrome is a severe illness often mistaken for a lame excuse to stay in bed and be lazy all day.  There is nothing more emotionally painful to realize your friends and family do not understand what you are going through and brush you off with a simple "you'll be fine" "it can't be that bad" "you just need to exercise" or "just be positive".  I can assure you though, suffering from Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) should never be underestimated by anyone or taken as a light matter.

 

What exactly is ME/CFS

You do not know the meaning of the word "fatigue" until you truly experience it flesh and blood.  It may last months and even years and it may never go away.  Suffering from profound fatigue for more than six months is the first symptom that will raise a red flag and make you realize that something is truly wrong with your body.  In profound fatigue is usually accompanied by many other symptoms that worsen the condition. In ME/CFS you have your really bad days, and your not so bad days and I don't want to sound negative here, it's really not my intention, but rarely will you have good days (physically speaking).  

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