Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Watch this video blog: Research Shows Family Caregivers Want More Education on Caregiving

The National Alliance for Caregiving in collaboration with AARP did an extensive report on “Caregiving in the U.S. 2009”.  The report shows that the increase for information and formal caregiver training has increased over the past 5 years. 

What family caregivers want is more information and education on, is care recipient safety at home, easy activities to do with the person they are caring for, as well as how to choose a home care agency, assisted living facility or nursing home.  A large portion wanted information on one subject and since the report showed an increase in those caring for someone with Alzheimer’s disease – that is one of those areas we just can’t give families enough information and guidance.

It was interesting to me that families looked to the doctor for ideas on education and in our area very few physicians are aware of what is available in the community unless they were connected to a senior service of a local hospital.  They also looked to their caregiving provider for information – however, not all home care agencies have skilled professionals to provide caregiver specific education.

Another surprising finding is caregivers expressed less desire for information about finding time for themselves.  I am not sure how to interpret this – I would like to say that they all find time for self-care or at least more know of the importance of caring for oneself while caring for another.  I hope it isn’t that they are overly focused on caregiving and have not thought about their own needed self-care.

See our website for the classes and support groups we have scheduled in our offices and in the community.  We believe information is empowering.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

When a family member is diagnosed with Alzheimer’s, often little is given to the patient or the family as they all are entering a very long journey of feelings of anger, disbelief, grief, depression, fear and concern.

It would be my ideal that each family who must experience this disease is given a coach to help them find joy and peace on this path that can be filled with potholes.  The professional could help families review and update legal tools that will be needed for decisions in the future, help them look at all the options for the future and help them plan for the costs as well – enlightening them to entitlements and benefits.

The coach would get to know the family on an intimate level and know what types of interventions would work well for the patient and each family member.  How we approach a challenge will vary from person to person and from family to family – we are all unique.

When the families have the trust in one single person or a small group of people to guide them on this journey, they truly can be freed to live and find joy in the moment.

Often professional Geriatric Care Managers are experienced at Alzheimer’s family coaching and, with just one visit a month, can give families the life line then need to find peace of mind and quality of life despite having to traverse a disease that steals minds.  At Eldercare Services, we have been guiding families in this manner for many years.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

It is important in communicating with someone who has Alzheimer’s or a related dementia, to know the words they have always used for a room like the toilet – did they say “powder room”, “bathroom”, ”can” or another? 

If your family member is going into a care center, retirement community or dementia care facility and they spoke a language other than English as a child – be sure to communicate this information to caretakers because, as the disease progresses, also do language skills.  The word they used in English might be gone, but the word they learned for “bathroom” as a child remains.  Language loss will affect both the receptive and expressive language skills.  

So, if their most recent language is their second language, give the caretakers a list of important words in the language of origin and a way to pronounce each for communication that is important like: bathroom, bedtime, mealtime, come, stop, go, yes, no.

Loving comes without language and it is our hope that all who care for those who have lost the ability to communicate with language will continue to care with love.

Watch Linda’s Video Blog Dementia and Communication!

Professional Geriatric Care Manager Supervisor Eileen Zagelow, BA, CMC

How often I have heard from a family member that their mother is in the hospital and seems so confused! 

Patients who were functioning fairly well at home often seem unaware, forgetful or anxious when in the hospital. Sometimes there are reports of combative or agitated behavior; or concerns that a patient can no longer function in their current living situation.  Disorientation, unusual behaviors and the inability to follow directions are words that break families’ hearts and cause them enormous stress.

It is important to remember that even for slightly confused seniors being out of their regular environment and structure can be overly stimulating. When that is added to their current illness, treatment and a parade of strange people popping in and out of their room all day, confusion can rise dramatically.

Dementia has many faces. Alzheimer’s disease, vascular disease, medication related confusion and oxygen issues are just a few of these faces. When a person suffering from dementia finds themselves chemically altered, physically displaced and surrounded by unfamiliar faces it is “normal” for them to experience an exponential increase in confusion. 

When concerns arise about whether Mother or Dad can return home, it is very important to know that this is not a desirable time to make a placement decision.  Often times once seniors have been medically treated for their illness and return to the familiarity of their home they can recoup a level of function befitting their living environment, not necessarily back to their previous level, but possibly enough to manage. Indeed, the familiar environment itself can often help in stabilizing seniors.  This happened with my own father who had COPD.  The doctor said that although he would like to keep my father in the hospital a bit longer, he could see that his confusion and agitation were getting worse.  He thought Dad would improve more rapidly in his comfort zone – home.  And he did!

There are occasions when a temporary stay at a skilled nursing facility might be part of the “return to home” care plan and other times when bringing in live-in or hourly caregivers may be appropriate until the patient has an opportunity to stabilize. 

Fortunately, Geriatric Care Managers are highly skilled in navigating these waters. Their knowledge, empathy and organizational abilities can clarify options and assist families and patients in attaining the best solution for the senior.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

When a family member is diagnosed with a progressive dementia, it is challenging not only for the “patient” but even more so for the entire family system.  Diseases such as Alzheimer’s impact everyone in the family and sometimes in the community (if the person doesn’t have family).

Those who oversee the care of someone with a dementia, should schedule regular appointments with the primary care physician and bring to the attention of the doctor any changes in behavior, which can sometimes be a signal of illness.

Over ½ of the primary caregivers caring for someone with a dementia suffer themselves from untreated depression.  So, it is just as important that the family caregiver be seen by a primary physician regularly as well.  Untreated depression and stress can lead to cardiac events such as heart attacks or strokes.  Self-care becomes more important when you are a primary family caregiver.

Family caretakers should connect with a support group and enroll in educational courses that prepare them for the caregiving journey.   Those who participate in day care programs, support groups, and have a spiritual resource cope better.

Quality in life comes one day at a time and it is important for the caregiver, as well as for the person with a memory loss disorder, to find pleasure in every day.  Make this a goal, even if it is a short walk in a well cared for park or sitting watching children in the playground.   Caregivers should cultivate as well as keep interests in activities that have always given their life pleasure.

In working with family caregivers, I often tell them to try to budget dollars and time that they will spend each month on keeping pleasure in their lives, despite the journey of being a caretaker to someone with a dementia.  The budget of dollars allows them to spend money on day care, home care or respite stays so that they can renew themselves with quiet time or a personal interest such as travel, entertainment or one-on-one time with a grandchild.  Even though these dollars seem to be spent on them it actually allows one to care for someone a longer period of time because they are finding pleasure in life at the same time as providing 24/7 care for another.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

When a grandchild sees a grandparent losing the capacity to remember and they are less than 10 years of age, it is hard for them to understand what is happening to Grandma or Grandpa. 

Try to give the individual with dementia the pleasure of relationship with a younger family member – it just might be the medicine they need.  Help your child understand their grandparent has an illness that affects their memory and ability to understand requests or even stories being shared.

Here are 4 helpful hints to share with your child in order to have a relationship with someone with Alzheimer’s or a related dementia:

1)         Don’t ask Grandma to do something she can no longer do – like making cookies.  Instead, invite her to share a cookie with you.

2)       Share information about your activities with Grandpa but keep the details simple.  Instead of giving the details of a softball game simply state, “I hit a homerun today”!

3)       People with dementia or memory loss often don’t like sudden or loud noises.  Approach a Grandparent slowly, speak so you can be heard, but don’t shout.  Tell them your name, “Hi Grandpa, it’s me, Billy”.

4)      Grandparents often just like to watch you do something, like playing a piano, drawing a picture or even doing your homework.

There is no substitution for hugs and kisses.  Most of us love to be loved – but occasionally this is refused.  This response doesn’t mean Grandma doesn’t love you – it just means today her illness has her confused and she doesn’t understand who you are.  Try again another day.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Recently, at a class I was teaching, someone asked why her mother with Alzheimer’s dementia would not eat in the skilled nursing home she was in when at home she didn’t have a problem.

 Often, in medical and residential facilities, they give the patient too many choices, a challenge for those with dementia.  I told her to take off all the glasses and cups of fluid (they had given her juice, water, milk and tea) and just leave one liquid on the tray at a time.  The same for foods – if a plate is given with too much food on it – it can easily overwhelm those with a dementia.  So, think about no more than two foods on the tray or in front of a family member with dementia at a time.

 The same holds true for utensils – just put the utensil needed for the food in front of your Alzheimer family member.  For example, if you give someone a bowl of soup – just the spoon. 

 These few shifts in the environment made all the difference for this client’s mom.

Here is the link to the ABC News article covering the story:

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

The Caregiving Legacy Award from the Rosalinde and Arthur Gilbert Foundation is being given to the “Alzheimer’s Dementia Strategy and Dementia Summit”.

 I had the honor of serving on this panel with many other leading Dementia experts in San Francisco.  My role, based on expertise, was that of “Care Coordination and Professional Care Manager.”  Most of the research we found pointed to the value and need of a central person to be the guide and contact for primary caregivers.  Families who had Care Management worldwide were better able to cope with the changes and transitions this disease presents.

 Our panel was charged to come up with a plan for the city of San Francisco to be pro-active in designing services needed by caregivers and organizations.  The plan was to look at the needs of this growing population for the next 11 years – pro-active planning at its best.

 The final report will be available soon from The San Francisco Department of Aging and Adult Services and/or The Family Caregiver Alliance.

 It was truly an honor to work with experts in public policy, research, medicine, community services and the private sector.   In this time of a down economy it was good to focus on what we can do, what we want to do and what is most needed.  The Baby Boomers are aging. Everything we can do, for treatment, prevention, public policy, benefits and education of Alzheimer’s, now will prepare us for a future of “positive caring”!

 Congratulations San Francisco!  Thanks for letting me be a part of a pro-active plan.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Often those with dementia are excluded from social events because they become confused or anxious when they no longer can track conversations or follow directions for games such as Bridge.

I am often asked, “What can I do with my friend who has memory loss or dementia?”. A few simple ideas:Invite them to lunch but don’t confuse them with a menu just say, “let’s go get some spaghetti and meatballs” and you do the ordering. When you eliminate the overwhelming options you are more likely to get a “yes” to your invitation and reduce the anxiety that menus or choosing a restaurant present.When you get to the restaurant just say to the waiter, “We want the spaghetti and meat balls- no need for a menu.”

Another idea is to ask the person to take a walk with you and just stay present on the surroundings; focus on the flora and/or wildlife.No need to remember, you just need to feel the day.It is surprising how many people with dementia and/or memory loss can’t remember the outing but their family will report how relaxed they were when they had the experience of just enjoying the moment.This is a gift those with dementia give us – the moment.