Tuesday, August 30, 2011

fear of retaliation in skilled nursing facilities

NORC - National Long-Term Care Ombudsman Resource Center. :: Connecticut Video: Voices Speak Out Against Retaliation

June 9, 2011

Prompted by a resident question at the 2005 VOICES Forum, Connecticut’s Long-Term Care Ombudsman Program (LTCOP) initiated a statewide work group and also commissioned the University of Connecticut Health Center to study fear of retaliation in skilled nursing facilities. That study concluded retaliation and the fear of retaliation is a reality in any supportive housing situation. Retaliation can be either egregious or subtle; many forms of retaliation may not even be recognized by residents or staff. Therefore, as one part of a comprehensive awareness initiative, LTCOP designed the Voices Speak Out Against Retaliation training video to acknowledge that fear of retaliation is a reality for individuals living in skill nursing facilities.

http://www.ct.gov/ltcop/cwp/view.asp?a=3821&q=475428 Video Voices Speak Out Against Retaliation - English

Thursday, August 25, 2011

Unusual behaviour | same activity, same question repeatedly, Phone calls, 'perseveration

The information provided on this blog is for the benefit of people with dementia, carers, health and social care professionals and others with an interest in dementia. It provided by Alzheimer's Society UK © Copyright 1998-2011 All rights reserved

The Alzheimer's Society believes in the free dissemination of information as far as possible. However, proper credit and citations to the Alzheimer's Society should be included wherever the information appears. Original article http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=159

Unusual behaviour

As dementia develops, it can cause behaviour changes that can be confusing, irritating or difficult for others to deal with, leaving carers, partners and family members feeling stressed, irritable or helpless. By learning to understand the meaning behind the actions, it can be easier to stay calm and deal effectively with the challenges that arise. This factsheet outlines some typical sorts of unusual behaviour in people with dementia and explains some common causes.

Each person is an individual, with their own preferences and character traits. However, certain forms of behaviour are particularly common in people with dementia. If the person you are caring for has difficulty expressing him or herself in words, the unusual behaviour may become more extreme. By working out what each behaviour means, and finding ways to overcome the problem, the situation can become more manageable.

Common types of unusual behaviour

Repetitive behaviour

People with dementia often carry out the same activity, make the same gesture, or ask the same question repeatedly. Medical professionals sometimes call this 'perseveration'. This repetition may be because the person doesn't remember having done it previously, but it can also be for other reasons, such as boredom.

It is not unusual for a person with dementia to go through the motions of the activity they may previously have carried out at work. This can indicate a need to be occupied and to feel there is a purpose and structure to their life. Specific types of repetitive behaviour may include:

  • Asking the same question over and over again - As well as memory loss, this can be due to the person's feelings of insecurity or anxiety about their ability to cope. Try to be tactful and patient, and encourage them to find the answer for themselves. For example, if they keep asking the time, and you know they are able to understand the clock, suggest that they look at the clock themselves. It may help if you to move the clock to a position that is more visible. People with dementia may become anxious about future events such as a visitor arriving, which can lead to repeated questioning. It may help if you don't mention the event until just before it takes place.

  • Repetitive phrases or movements - This can be due to noisy or stressful surroundings, or boredom. Encourage the person to do something active, such as going for a walk. It can also be a sign of discomfort, so check that the person isn't too hot or cold, hungry, thirsty or constipated. Contact the GP if there is any possibility that the person may be ill or in pain, or experiencing a side-effect of medication.

  • Repetitive actions - Actions such as repeatedly packing and unpacking a bag, or rearranging the chairs in a room, may relate to a former activity such as travelling or entertaining friends. If so, this may serve as a basis for conversation. Alternatively, it could signify boredom or a need for more contact with people.

  • Repeatedly asking to go home - This may take place in residential care, or when the person is already at home. It can be a sign of anxiety, insecurity, fear or depression. The concept of 'home' might evoke memories of a time or place where the person felt comfortable or safe, or of a home, family and friends that no longer exist. If the person doesn't recognise their present environment as 'home', then it isn't home for them. Try to understand and acknowledge the person's feelings and reassure them that they are safe and loved. 

  • Multiple phone calls - Some people with dementia phone their loved ones over and over again - particularly in the middle of the night. This can be very frustrating and distressing. The person with dementia may forget that they have already called, or may be insecure or anxious. If you are receiving repeated calls, it may help to get a phone with a number recognition display or an answerphone so you can decide whether you want to answer, and switch mobiles and ringers off at night. You may feel guilty about not answering every call, but it's important to look after yourself and get some rest.

Tips: Coping with unusual behaviour

  • Try to remember that the person you are caring for is not being deliberately difficult, their sense of reality may be very different to yours but very real to them. Dementia can affect a person's ability to use logic and reason so things that may seem obvious to you might appear to be very different for the person with dementia.

  • Ask yourself whether the behaviour is really a problem. If the behaviour is linked to a particular activity such as washing or dressing, ask yourself if this task really needs to be done right now or if you could leave it for a while until the person has calmed down.

  • Try to put yourself in the person's situation. Imagine how they might be feeling and what they might be trying to express.

  • Offer as much reassurance as you can.

  • Remember that all behaviour is a means of communication. If you can establish what the person is trying to communicate, you will resolve the problem much more quickly.

  • Distract the person with calming activities such as a hand massage, stroking a pet, a drive in the country or by playing their favourite music.

  • Try to make sure that you have support for yourself and breaks when you need them.

  • Some people find unusual behaviours, particularly a repetitive behaviour, very irritating. If you feel you can't contain your irritation, make an excuse to leave the room for a while.

  • If you find the person's behaviour really difficult to deal with, ask for advice from professionals or other carers before you become too stressed. Medication may sometimes be used for these behaviours, but this should be monitored and reviewed very carefully. Ask about the possible side-effects of any drugs so that if they appear you do not automatically assume that the dementia has become worse.

  • Remember that it is possible to be the cause of the behaviour through a lack of understanding of what the person is trying to communicate. Try stepping away from the situation, look at the person's body language and try to understand what they might be feeling at that time. Give the person space to calm down and offer reassurance.

ombnewssum1997.pdf (application/pdf Object)

ombnewssum1997.pdf (application/pdf Object)

Tuesday, August 23, 2011

articles and search engines for finding in-home care


local chapter of the Alz Assoc:


Area Agency on Aging:


Repetition Repetition Repetition Repetition Repetition Repetition Repetition Repetition




How to Manage Repetitive Behavior in Alzheimer's Disease From Carrie Hill, PhD,
As Alzheimer's disease progresses, your loved one might start repeating a sound, word, question, or action over and over again. While this is usually harmless, it can be extremely unnerving for caregivers



People with dementia may repeatedly say or do something over and over again. For example, they may repeat a word or question or pace back and forth. Suggestions: Try accepting the behavior if it causes no harm or redirecting it to a harmless or even useful activity if necessary.

Repeating the same words or phrases again and again
As the disease progressively impairs cognitive function, the person with dementia will increasingly have trouble communicating verbally and understanding what has been said.

Those who interact with the person may recognize some of the following changes:

Difficulty finding the right words

Repeating the same words or phrases again and again

Substituting words that sound similar

Inventing new words to describe familiar objects

Easily losing train of thought

Difficulty organizing words logically

Reverting to speaking in a native language

Using curse words (a strange quirk of diseases that sap language skills)

Speaking less often, or even not at all

Relying more on nonverbal gestures to compensate

Trouble understanding conversation, questions and instructions

The site offer tips for connecting with Alzheimer's patients whose neurodegenerative brain disease makes communication a constant struggle for them and a crucial challenge for caregivers.


Tips for Dealing with Specific Dementia Problematic Behaviors
Carrie Hill, Ph.D. and Natalie Reiss, Ph.D



Repetitive speech or actions
Alzheimer's patient may repeat their words or actions. This requires patience on your part. Reminding them that they just said or did a certain thing does not help.
Sometimes ignoring the repetitions can help, as long as you've determined that there is no harm in doing so. Try using signs that have the time for meals written on them, or simple directions to the bathroom. Avoid discussing plans for an event too far in advance.

You will need to rule out any medical problems by discussing this symptom with the doctor


Alzheimer's Disease Glossary of Terms


Thursday, August 18, 2011

Hiring Private Duty Home Care Workers:

{original article By Rona S. Bartelstone}

Hiring Private Duty Home Care Workers:

Why Work through an Agency?

By Rona S. Bartelstone, LCSW, BCD, CMC

One of the greatest long-term needs of older adults and those with chronic illnesses is for in-home, custodial care services. These workers are often referred to as home health aides, certified nursing assistants and custodial care workers. These in-home workers make it possible for people with functional limitations to remain at home in a comfortable, familiar environment. Home health aides (as we will refer to this class of workers) provide a wide range of assistance with activities of daily living (ADLs), such as bathing, dressing, grooming, assisting with ambulation or transferring, toileting, feeding and providing medication reminders. In addition, home health aides help with what professionals call, instrumental activities of daily living (IADLs), such as shopping, meal preparation, making medical appointments, transportation, laundry and companionship.

"..... The biggest proportion of people who utilize home health aide services are those who need several hours per day of assistance, as opposed to those who need full-time care.

Due to the cost and the increasing shortage of home health aides, many families seeking to hire in-home staff turn to private individuals rather than working through an agency.

While at first glance this seems reasonable, it can also cause numerous problems and create unexpected liabilities for the family, who becomes the employer."

Tax Issues

Sunday, August 14, 2011

caregivers training, & caregiver care | Free

caregivers training, videos website

CaregiversTrainingVideos.com is a free service website that specializes in giving family caregivers the learning tools necessary to succeed in caring for a loved one at home.

Some of the video topics are: How to use a gait belt, Fall Prevention, How to use a transfer board, Selecting a homecare agency, How to use a walker, Legal issues for seniors, Dementia care giving and much more.

CaregiversTrainingVideos.com hopes these instructional aids will assist you to care for your family member, friend or client. Our team of trainers has many years of experience in the medical field.

We pooled our knowledge, expertise, and invited guest speakers from various disciplines to bring you these instructional videos.

To strengthen our relationship and partnership between CaregiversTrainingVideos.com and the family home caregiver, we encourage comments and suggestions for additional topics. Therefore, please email us with your suggestions.

Saturday, August 13, 2011

Learning a few Basics of AlzHeimer's Disease

confabulating "confabulating At its simplest, people who confabulate provide information, or act based on information, that is obviously false. These people are genuinely unaware that the information is wrong." ~ ALZcarer

Denial ? No: it is anosognosia

"A lack of awareness of impairment, not knowing that a deficit or illness exists, in memory or other function is called anosognosia. The term anosognosia refers to brain cell changes that lead to a lack of self-awareness. Many Alzheimer's patients appear to be in denial ... actually, they have anosognosia, and do not realize that they have problems."

Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience": "Alzheimer Disease and other dementia's slowly steal all memories and abilities that have been learned since infancy - a process of progressive, permanent amnesia."

"All dementia's are characterized by progressive brain failure due to brain cell deterioration and brain cell death. All dementia's are fatal illnesses. As the brain deteriorates, the person's ability, understanding and behavior go through many changes. "

Jolene Brackey's book, "Creating Moments of Joy"" is great -- full of very practical, simple advice on how to make our loved ones feel loved, happy, and safe: So often it is difficult to find the ways a person with Alzheimer’s wants to be cared for because they lose the ability to communicate. The question to ask the children when the person cannot answer is, “How was love expressed in your family growing up?"

Naomi Feil's "validation therapy"

"Validation is a method of communicating with and helping disoriented very old people. It is a practical way of working that helps reduce stress, enhance dignity and increase happiness. Validation is built on an empathetic attitude and a holistic view of individuals. When one can "step into the shoes" of another human being and "see through their eyes," one can step into the world of disoriented very old people and understand the meaning of their sometimes bizarre behavior."

Alzheimer's...There IS hope.Alzheimer's care known as habilitation

A form of caregiving, championed by internationally recognized expert Joanne Koenig Coste, is significantly improving the lives of Alzheimer patients and their families. Since 1973 she has been advocating a compassionate and common sense approach to Alzheimer's care. Habilitation uses easy techniques to help people with the disease and their carepartners on the journey through Alzheimer's.

Healthcare Professionals!Learning to Speak Alzheimer's Guide to a complete in-service training program and LTSA Certificate of Completion

Thursday, August 11, 2011

The Challenging Behaviour Foundation's At-a-glance guides for carers

View topic - The Challenging Behaviour Foundation's At-a-glance guides for carers | The Princess Royal Trust for Carers

Online support team at Wed Jun 29, 2011 2:34 pm

Hi everyone,

We thought some of you might be interested in this link to The Challenging Behaviour Foundation Website where there are three new ‘At a glance’ guides aimed at family carers supporting people whose behaviour is described as challenging. The guides have been developed in collaboration with the Social Care Institute for Excellence and there are separate guides for adults, teenagers and children. You can find out more information here:

http://www.challengingbehaviour.org.uk/ - there is a link in the New Resources section on the left-hand side to ‘Challenging behaviour at-a-glance’ where the guides can be found.

We hope some of you find this helpful :)

Online Support Team,


Wednesday, August 3, 2011

Eating and Drinking | ensure loved ones drink enough fluids, & maintain their weight

Eating and Drinking » Alzheimer's Compendium

Many caregivers become frustrated, trying to ensure that their loved ones drink enough fluids, and maintain their weight.

The Geriatrician Blog

The Geriatrician
While there are many web sites to serve as resources on the Internet, <>hope this blog takes on the flavor having geriatrician in your own family. The goal is to make a medically accurate and understandable analysis of geriatric issues (such as treatments) available to anyone who has an interest in issues of aging and geriatrics.

Tuesday, August 2, 2011

Welcome to ADRC Technical Assistance Web Site! : HomePage

Welcome to ADRC Technical Assistance Web Site! : HomePage

The U.S. Administration on Aging sponsors this Exchange to make information and resources available to states and community organizations. AoA is committed to supporting states' efforts to develop and sustain a person-centered, self-directed national long term supports and services system. This system should effectively assist consumers with identifying and accessing a range of home and community based resources that maintain individual independence. This website provides a forum to allow a diverse community of stakeholders involved in making changes to their long term services system to exchange ideas, knowledge, and best practices.

Monday, August 1, 2011

UK Care Quality Commission

Care Quality Commission


The independent regulator of health and social care in England.

We regulate care provided by the NHS, local authorities, private companies and voluntary organisations. We aim to make sure better care is provided for everyone - in hospitals, care homes and people's own homes. We also seek to protect the interests of people whose rights are restricted under the Mental Health A