Tag Archives: families

World Alzheimer Report: Private Sector Response

Let’s not wait for the public sector to develop plans to address the dementia crisis. The private sector can and should play a large role.

This expert is from the Alzheimer’s Disease International website referencing the World Alzheimer Report of 2019.

“The report reveals the results of the largest attitudes to dementia survey ever undertaken, with almost 70,000 people across 155 countries and territories completing the survey. It spans four demographic groups: people living with dementia, carers, healthcare practitioners, and the general public.”

Further, the analysis of the study was carried out by the London School of Economics and Political Science (LSE).

Specifically, some of the key findings of the report include:

  • Almost 80% of the general public are concerned about developing dementia at some point, and 1 in 4 people think that there is nothing we can do to prevent dementia
  • 35% of carers across the world said that they had hidden the diagnosis of dementia of a family member
  • Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even while expressing positive sentiments about their role
  • Almost 62% of healthcare providers worldwide think that dementia is part of normal aging
  • 40% of the general public think doctors and nurses ignore people with dementia

Call to Action for Private Sector

In addition, the report lists several calls for action, many of which rest with local, state, and national governments and agencies thereof.  However, the private sector can do a lot to address the disheartening vital findings. People are hurting, suffering, concerned, and uneducated about dementia.

Conversations at my faith community are under-way about how to minister to persons with dementia and their caregivers. Educate citizens about dementia to demystify, normalize, and create an environment of understanding and acceptance.  This is an excellent place to start.

In conclusion, call upon local experts to help start the conversation within your circle of influence and ask questions.  Success will come with each small step.

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  In addition, she is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

The Important Role that Money plays in Caregiving Decisions

It’s no secret that families tend to shy away from the topics of money and death more often than not.  The fact, however, is that caregiving decisions often revolve around money, as care options will vary greatly depending on one’s assets.  So money plays a very important role in the choices that are made and discussions that take place between family members.

Understanding generational differences with respect to money can help today’s caregivers.  Like my own parents who were raised during the Depression,  money for our oldest generation was to be saved.  Before the era of mass production of goods, this generation did not waste, valued “things” in terms of their quality and how long they would last.   Older generations did not accumulate debt but rather watched their nest egg grow through hard work and perseverance.  One of their goals is the ability to leave an inheritance for their children.   In turn, adult children have expected this nest egg, rightfully or not.  And this is when conflict arises when families are faced with decisions on parent’s long-term care.

Too often, parents are reluctant to talk with their children about their financial situation.  My advice was always to give their children the gift of talking about it BEFORE  needs arose for decisions to be made that may conflict with theirs.  So plan A is always for families to approach this difficult topic earlier than later.

Try to start the conversation with a what-if scenario.  “Mom, we want to make sure that decisions regarding care are ones that you had envisioned.   We never know what to expect, but what if you fell and broke your hip and this required you to have ongoing care.  Can we talk about what this might entail and what you would want as next steps?”

Or another conversation starter might look like this:  “Dad, you have always been such a wonderful provider and keep such great care of your finances;  I know everything is fine now, but what if something happened to you?  Can we talk about how you would like help with paying bills?”

Children and other family members need to be respectful of the money issue, understanding that when one gives up oversight of their finances, even if it’s perceived as such, it’s a huge step in losing independence.  Tread these waters gently, approach with a sincere heart and understand that an initial response from others may be to pull back.  If that’s the case, then give it time, and reapproach maybe at a different time and with another family member present.

Put yourselves in the place of that person before approaching, and ask how you would like to hear the words of the person talking about the difficult money topic.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  

http://www.AGEucate.com

How Counseling Can Help Caregivers Cope with Emotions

Caring for a close family member friend can be emotionally overwhelming.  While many caregivers find fulfillment in helping another person, along with this comes feelings of loss, anger,  grief, and guilt.  Caregivers struggle with depression and anxiety at a much higher rate than the general population.  Counseling can be very beneficial for helping people with what is called caregiver burnout.

Learning to cope with the myriad of emotions that accompany caring for persons with dementia is critically important.  Unfortunately too often caregivers don’t realize they are spiraling downward until it’s too late.  The importance of self-care goes well beyond eating right and exercising when it comes to caregiving.   Counseling can be beneficial in allowing caregivers to express their emotions, while also benefiting from non-judgemental guidance that counselors can provide.

There is sound evidence that counseling and support groups can reduce stress in caregivers of people with dementia. This evidence is strongest for face-to-face or telephone assistance that is targeted at caregivers with depression and tailored to the individual and their circumstances. If caregivers can learn how to respond to persons with dementia, and understand the signs of depression and anxiety in themselves, they are much better prepared for day-to-day changes that are inevitable.

Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude – from positive, and caring to negative and unconcerned.  Burnout can occur when caregivers don’t get the help they need, or they try to do more than they are able, either physically or financially.

Symptoms may include fatigue, stress, anxiety, depression, withdrawal from family and friends, loss of interest in hobbies or activities, feeling irritable, hopeless and helpless, change in appetite, weight or both, changes in sleep patterns, getting sick more often, excessive use of alcohol or medications, and even feelings of wanting to hurt yourself or the person you are caring for.

Factors that lead to caregiver burnout include role confusion, unrealistic expectations of yourself or others, lack of control, unreasonable demands and lack of caregiver education.

If you or a loved one has signs of caregiver burnout, please seek a support group or counselor as soon as possible.  The snowball or domino effect of burnout can have many detrimental effects on care partners and their families.

If you would like a list of Symptoms of Caregiver Burnout, please contact us and we will send you this list, which we suggest you tape on your bathroom mirror to remind yourself of what to watch for.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  

http://www.AGEucate.com

For 24/7 hotline contact ww.alz.org

How Can We Lovingly Embrace the Ending…Tips for Families

What is a harder conversation topic with elderly parents – money or death?  If you guessed death, you get a gold star.  Why do we find it so very difficult to discuss the inevitable?  Surely we’ve all come to grips with the fact there is one thing certain about life and that is death.  We can embrace the ending by learning to embrace the life that we still have with our loved ones until the times comes when they are no longer with us.

Often it is not death that frightens people but the process of death.  Will there be pain, suffering and will it linger?  Fear of the unknown often is what ties us up into a pretzel of NOT wanting to talk about the ending.  What if we could learn to open up conversations so that everyone could be more prepared for the unknown, more accepting of death itself, and in turn make the process of dying a compassionate and loving experience?  Sadly, too often I see insecurity indecisions and pain overtake what could be a sweet time of compassion, filled with memories in itself.  Memories to embrace and treasure.

Most families have a considerable amount of unfinished business in this arena.  Here are some tips on how to open doors of communication, come to grips with what some call a “long goodbye”, especially those living with dementia or other chronic illness, and certainly lastly how to make the goal of acceptance and compassion be first and foremost in all planning, decision-making, and conversations.

  •  Make your wishes known.  That means we listen to our loved ones, preferably long before we have to make difficult decisions for them.  I want to interject here that we all need to understand that we should be guided by Plans A, B, and C – understanding the Life Plan A almost never is a reality.  That said, as care partners and families we do our very best to fulfill those wishes, but many circumstances may make that impossible.  Far too many times I’ve heard promised made to loved ones that they will be able to pass at home.  When the time comes, and that is not able to be fulfilled the family member feels horrible guilt.   Remember, we should be open and honest in lovingly expressing that we will do all we can to fulfill their wishes, but that it may not be possible for a number of reasons.
  • Spend more time embracing the moment of the ending rather than funeral plans.  Why is it that we agonize over what songs will be sung and flowers delivered – when our loved one needs our compassionate hand to embrace and hold at this moment?  Far too long we have gotten priorities a bit confused would you agree?  What if we put that energy and emotion into what can be embraced int he here and now?
  • Remeber that one’s feelings and emotions remain intact, although declining, until the end of life.  Response to touch, expression, love, music, even nature can have profound effects on the dying person.  Talking “around” a dying person is as much a sign of disrespect as it is a sign that they’ve been dismissed as a person.

“Our ultimate goal, after all, is not a good death but a good life to the very end.”
Atul Gawande, Being Mortal: Medicine and What Matters in the End   

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who care for them.  She is co-creator of the Compassionate Touch® program for end-of-life care.  www.AGEucate.com