Alzheimer’s and dementia: Supporting caregivers

This post from Notes for Dementia Caregivers is written by a businessman in India, but he has a lot to share with the families of caregivers everywhere. It’s entitled “Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared.” Here, he looks back on some of his early “mistakes.” Follow the link to read his lessons and tips to help the dementia caregivers in your life.

My mother-in-law suffers from dementia, and my wife is the primary caregiver. Nowadays, I introduce myself as a secondary caregiver, but I did not always see myself in this role. After my mother-in-law was diagnosed, and my wife took over the role of the primary caregiver, I failed to support her for many years because of ignorance and some incorrect attitudes.

Briefly, I did not try to learn about dementia or its caregiving after the diagnosis and had no idea of what to expect. I think I expected no impact I underestimated the caregiving load and did not appreciate that my wife could be overwhelmed physically and emotionally.

I perceived her as “negative” when she looked worried or asked me to reduce travel overseas because she would not be able to handle emergencies.

Most people in India treat dementia patients as they would treat any other elder. Close relatives egged my mother-in-law to show more “willpower” and criticized and mocked her for her “dependence” on my wife. They also blamed my wife of negligence and ill-treatment of the dementia patient based on the patient’s confused statements and their own faulty perceptions. I knew this was unfair. But I told my wife and mother-in-law to “adjust” or “ignore” critical comments instead of explaining facts to relatives. My wife was completely isolated by my relatives.

I think, subconsciously, I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. This unexamined assumption of mine affected my attitude and decisions for many years.

As my wife’s time and energy were diverted into caregiving, she had to give up the professional work she loved, and also her social life, her friends, and her hobbies. It was a loss of identity for her. I did not realise that she needed emotional and functional support, and that she needed time off from caregiving I think, subconsciously, I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work.” This unexamined assumption of mine affected my attitude and decisions for many years.

via Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared « Notes for Dementia Caregivers.

Survey: Alzheimer’s caregivers’ concerns

Family caregivers’ greatest concerns about the progression of a loved one’s Alzheimer’s disease are memory loss 41 percent, personal safety 33 percent and confusion 27 percent, finds a new survey.

The poll of 524 caregivers also found that 67 percent named at least one cognitive or thinking skills’ change in their loved one as a main concern; 55 percent said caring for a loved one with Alzheimer’s has taken a toll on their own health; and 60 percent said they felt overwhelmed.

via Survey Reveals Alzheimer’s Caregivers’ Top Concerns.

California camp for Alzheimer’s patients isn’t about memories

When Samara Howard recently dropped off her elderly mother Johnnye Jennings at a three-day camp for people with Alzheimer’s and other types of dementia, it was the first night she’d been away from Jennings in seven years.

“Normally, I only sleep maybe two hours a night because she wakes up and she wanders and she turns on the stove,” says Howard, who eventually had to quit her job to take care of her mother full-time.

“I haven’t slept through the night in years.

You hear these stories of exhaustion and frustration often from the families of the roughly 5 million Americans who have Alzheimer’s disease or other forms of dementia. Confusion, wandering and agitation are common with dementia, and usually any break in the daily routine only increases those reactions.

via Camp For Alzheimer’s Patients Isn’t About Memories : NPR.

Researchers plan study on autism caregivers, stress and coping

Autism caregivers will undergo Coping Effectiveness Training in a new study aimed at combating caregiver stress.

Coping Effectiveness Training, which is based on cognitive behavioral therapy, has been successful at reducing stress and increasing feelings of control in other high-stress groups – including spinal cord injury and HIV-positive patients. The study is being conducted at the National Institutes of Health Clinical Center.

In recent years, there have been a growing number of individuals diagnosed with Autism Spectrum Disorders (ASD). As such, this increase has expanded the number of caregivers of children with ASD.

Research has shown that having a child with an ASD is stressful for caregivers and their families. More specifically, prior research suggests that caregivers of children wit h ASD may find it difficult to maintain feelings of control and to cope with the overall physical and emotional demands of caring for their child.

A previous study of caregivers of children with ASD found that caregivers felt a lack of personal control over aspects of their child’s condition and also found it difficult to cope with various demands of caregiving.

Furthermore, this study found that greater levels of perceived personal control and the use of problem-focused coping strategies were associated with caregivers’ adaptation to their child’s condition.

As such, the goal of our research is to conduct a feasibility study using a coping effectiveness training (CET) intervention designed to enhance perceived personal control (PPC) and coping efficacy in caregivers of children with ASD. There has been a growing interest in developing interventions targeted at constructs involved in the adaptation process. However, there have been few studies of interventions targeting predictors of adaptation such as PPC and coping efficacy. Research has shown that the CET intervention can enhance coping efficacy in several other populations.

via A Coping Effectiveness Training Intervention for Caregivers of Children With Autism Spectrum: A Feasibility Study – Full Text View – ClinicalTrials.gov.

Adult night-care service for Alzheimer’s patients who may wander

Nighttime is when some Alzheimer’s patients are most restless, creating an anxious, sleepless time for caregivers who worry about their loved ones wandering.

“It is common for them to get their circadian rhythms off,” said Jean Van Den Beldt, administrator of Byron Center Manor, which plans to begin a new dawn-to-dusk activity program called Twilight Care.

The dementia-care and adult-day services community at 2115 84th St. SW is starting the program, which will run from 5:30 p.m. to 7:30 a.m., to keep restless patients in a safe, stimulating environment. The cost is $120 per night.

via New service keeps restless Alzheimer’s patients busy at night | MLive.com.

Taking a break, giving breaks; Autism and respite care

Here’s a good post from Our Journey Thru Autism on  respite care. It includes a list of ways non-caregivers can give caregivers a little break. So, if you need a break – please find a way to take one. And if you can give a caregiver a little break, offer some help.

Two weeks ago, I wrote about caregiver fatigue and burnout. As caregivers, it is important to be sure to take a break OFTEN enough to maintain a healthy balance between caregiving and personal needs. Many times, people want to help, but they don’t know what to do that will help. And many times, we simply don’t ask for help because we don’t have the time to ask.

via OUR Journey Thru Autism: Taking a Break, Giving Breaks…Respite Care.


10 Signs of Caregiver Stress

Caregiving is stressful, and sometimes that stress sneaks up on you. Here, the blogger at Sunflower Ranch has a useful list of 10 Signs of Caregiver Stress. Read the list and watch for the signs. Caregiver stress is bad for your health!

Caregiving is one of the toughest jobs you’ll ever have. Many are called to perform these duties — but few people want to do them. No one wants to see a loved one slip away physically and/or mentally. Certainly the loved one does not want to be put into the situation. I know, I’ve been there as a caregiver. And it’s not easy. But what can happen to the caregiver is like the storm on the horizon — a tremendous potential for danger and long-lasting effects.

I wish I’d had this list when we started caring for my Dad. He’s been gone now for almost two years, but the feelings can linger long after the whole episode is finished. This list and the links below are very helpful in understanding just how tough caregiving can be.

via Sunflower Ranch: 10 Signs of Caregiver Stress.

Yoga helps autistic kids deal with stress

BRIDGEWATER — Aiya Peters rolls back and forth on her back, pulling her feet up to her nose and giggling a glorious giggle.

“They’re stinky!” the six­-year- old laughed.

“Can I get another ice cream?” she asked, squirming over to her mother, lying quiet­ly on the mat beside her.

“Mommy, I love you,” she said, snuggling in for a cuddle.

Seconds later, she’s scampering about again. “Mommy, I have a new friend!

“For her mom, Elsa Veinot, those are beautiful words.Mother and daughter are at a yoga class for children with autism that’s run by the South Shore regional school board.

via Yoga helps autistic kids deal with stress – Nova Scotia News – TheChronicleHerald.ca.

Caregiver stress is a big health concern

April is Autism Awareness month. It’s also National Stress Relief Month. Caring for children with autism or adults with Alzheimer’s (or both!) is stressful, which can cause health problems for you the caregiver and for the loved one you are caring for. Read on for some tips from the Caregiving Club on caregiver stress reduction. And don’t forget to join SafetyNet’s Twitter contest that was designed with stress relief in mind – the prize is a $100 spa gift card!

Today is the start of National Stress Relief Month. And, although today is also April Fool’s Day – the stress that caregivers feel is not a joke.

Numerous studies, including one conducted by the National Alliance for Caregiving and Evercare, show that caregivers cite stress as their Number One health issue in caring for their loved one. In addition, one study from the Commonwealth Fund found that caregivers are twice as likely as the general population to develop multiple chronic illnesses sooner in life related to the increased stress of caregiving.

via Caregiving Club: Caregiver Stress Is No Joking Matter.

Dementia Caregiving: Don’t take things personally!

In this post from the CoHealth Blog, the blogger introduces Principle Number 9 of caring for someone with dementia. It deals with one of the hardest aspects of dementia caregiving – difficult behavior. Don’t take it personally; often that language or behavior is the dementia, not the person you’ve known and loved. Read on.

Principles of Behavior Management with Dementia – Don’t Take it Personally

It is easy to misunderstand or misinterpret the actions of someone with dementia, to wonder why he is saying hurtful things, or to feel offended when his interpersonal behavior and communications are so uncharacteristic for him. Whether in a residential setting or a nursing home, the effects of dementia can produce unpredictable and often offensive emotions, behaviors, and attitudes. Regardless of how long we may have known, loved, and cared for someone, there will be occasions when a coarse, crude comment, a striking out with a clenched fist, or a distasteful act like spitting is directed at the caregiver.

via CoHealth Blog: Principles of Behavior Management with Dementia – Don’t Take it Personally – Principle No. 9.