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Caring for a Person With Dementia — Assessment

Mohan is a family physician and a Postgraduate Associate Dean working in the UK. He has a keen interest in self-regulated learning.

"Entreat me not to leave you, Or to turn back from following after you; For wherever you go, I will go; And wherever you lodge, I will lodge; Your people shall be my people, And your God, my God." Ruth 1:16

"Entreat me not to leave you, Or to turn back from following after you; For wherever you go, I will go; And wherever you lodge, I will lodge; Your people shall be my people, And your God, my God." Ruth 1:16

Introduction

Dementia is a devastating condition. The effect it has on the afflicted often becomes the center of attention, with every symptom and every sign bringing on a new wave of distress to the patient and the caregivers. It is like a night watchman switching the lights off one by one in a vast museum of life: With every flick, a subsection of memory, of beauty, and of dignity vanishing into the darkness. While the physical and psychological needs of the patient stay paramount, it is all too easy to forget the needs of the caregiver themselves.

To be a good caregiver, not only do we need energy, determination, courage, and understanding, we also need insight, self-motivation and an enormous amount of self-care. A carer who doesn't care enough for themselves will emotionally and physically burn themselves out.

Far too often in my line of work, I have seen this happen and take it as my paramount duty not only to successfully draft a management plan for the patient with dementia but also for their family and their main caregivers. Without such guidance and attention, the caregiver's life can be tormented by misguided sense of loyalty, guilt, exasperation, self-doubt, and needless sacrifice. In such circumstances, the caregivers forget the main dictum of caring — You won't be able to care for someone else who is ill if you fall ill yourself.

NHS UK campaign for Dementia

NHS UK campaign for Dementia

What is Dementia?

Dementia is the name given to a variety of related symptoms associated with an ongoing decline of brain function. The key early symptoms affect:

Memory: Forgetting names, misplacing objects, losing short term memory

Thinking: Getting muddled, losing a train of thought, repeating oneself

Language: Forgetting words, using alternate words in place of the right ones, poor sentence construction

Understanding: Getting confused with directions, forgetting simple instructions, losing daily function such as orientation, sense of direction, unable to cope with multiple tasks

Judgement: Poor judgment, unsafe behavior, unable to assess risk of an action, too trusting or extreme paranoia.

Mood: Feeling anxious, irritable and eventually getting clinical depression

Beginning the Journey

Whether you are a close relative or a friend, whether you actively choose to provide care or just passively get roped into it, the journey of the dementia caregiver is an arduous one. It begins with the knowledge that the person who you knew and loved is going to change and change relentlessly due to the diagnosis of dementia.

The shock of such news is often a lot to take in. In other circumstances, you may be close enough to the patient/person previously to have been instrumental in suspecting the condition, encouraging an assessment, and seeking medical opinion. Often in the early stages, this is very difficult. The person experiencing the symptoms may be in denial, they may get angry and frustrated and may think you are nagging them. They chose to avoid seeking medical attention for fear of what it may reveal. They may end of delaying the diagnosis and a suitable early clinical management plan.

For those close, it is a hard task. At one end, you may be colluding with the patient in delaying the diagnosis and at the other, you worry about labeling them unnecessarily as dementia when they may just be experiencing memory disturbances like many others.

So you may already start the journey tired, frustrated and upset. If you are at this stage and are unsure how to proceed, you have come to the right place.

Some of the possible impacts of dementia on key brain functions are described in the box to the right. As you can see many of us can have any one of those symptoms at moments in our own lives, this doesn't mean we are experiencing early dementia. Other factors, such as frequency of occurrence, persistence of symptoms, combination of symptoms, advancing age (over 65), related diseases (high blood pressure, diabetes, heart disease, respiratory problems) may all combine to elevate the possibility.

Dementia Campaign Video: NHS UK

Caregiver/Family members Checklist for Early Diagnosis

Is the behavior/symptom linked to Dementia?

Are there any reliable online resources I can cross check these with?

Is it happening regularly and consistently?

How long has this been going on?

Does the person seem aware of it- do they mention it themselves?

Can I corroborate my own observations with others who know the person?

Do the symptoms have an impact on their daily living?

Will they let me accompany them to the primary care physician?

Approaching the Afflicted

  • Prepare yourself
  • Calm surroundings
  • Don't crowd or overwhelm
  • Give facts rather than judgement
  • Triangulate before
  • Seek help if needed
  • Try to negotiate a Safe approach
  • Be wary of other factors
  • Try not to collude
  • Listen and empathize
  • Don't let your anxiety intervene

Approaching the Issue

Persuading the person to visit their primary care physician can be a hard task. It needs careful negotiation, diplomatic dialogue and a lot of reassurance. Remember, the afflicted themselves may have noticed the symptoms and maybe worried sick. The reaction may well be one of relief. On the other hand, you may be met with anger, denial and even a falling out.

I always find that when we are worried about someone, we find it really hard to maintain our persuasive ability. We may either end up nagging them endlessly and irritating the life out of them or extrapolate worst-case scenario and jump straight to the consequences of their behavior. Hard though it may be, it is worth doing well. It is also worth remembering that our worries may well be disproportionate to the actual incidences.

My standard approach to dealing with abnormal behavior that leads me to suspect dementia would be first to examine the evidence calmly:

Ask myself the questions :

Is the behavior/symptom linked to Dementia?

Is it happening regularly and consistently?

How long has this been going on?

Does the person seem aware of it- do they mention it themselves?

Can I corroborate my own observations with others who know the person?

Once we have considered all these it is best to bring the subject up in a quiet and calm surrounding when the person is relaxed and has time to talk. There in point trying to bully them, or gang up on them. It may be tempting to seek some more support from siblings, other friends or relatives. It really depends on the relationship you have with the person afflicted.

When you bring up the conversation it's always better to state the facts first rather than opinions. State incidents, facts and your concerns and ask them whether they were aware of it. Also, ask them if they suspected anything or were aware of any other reason for their forgetful behavior. Memory loss can also be attributed to stress, overwork, alcohol, depression etc. However, it is better not to assume these are the reasons and try to get a physician's assessment urgently.

Preparing for the Physician's Visit

Once the person has agreed to visit the physician, it is important to prepare ourselves. All too often, I see patients and carers coming to the doctors totally unprepared and forget to ask even the basic questions and walk away confused. An understanding physician will know this and will give time to listen, explain and then clarify. However, in my experience many physicians give the sense of urgency, may use jargon and bypass vital information. This can be particularly unnerving when it is someone with early dementia or dementia like symptoms. The person may forget to give a whole history and may even miss out vital pieces of key information that are used to narrow the diagnosis. It is very important to have a summary of one's medical records ready in places where the family physician may not hold your continuing medical record. A list of any medication that one takes should be included even if it something one doesn't take regularly.

The best way to reduce such uncertainty is to prepare for the visit by having the following information ready.

Read Part Ii: Diagnosis - Here

  • Caring for a Person with Dementia #2 : Top Tips for ...
    Dementia is not a disease. It is, what we call in the medical parlance, a syndrome. A syndrome is a collection of symptoms and manifestations that can collectively represent a condition.It is therefore vitally important to get the right Diagnosis so

In summary

When you are worried that someone close to you may be exhibiting symptoms or signs of dementia, it is easy to be anxious and frightened. Approaching the subject in a timely and calm manner helps to plan things better. Look for corroborative evidence and take into account the frequency, consistency and the number of symptoms.

You are most likely to notice the changes, particularly in early presentations due to your closeness to the person. Use this to your advantage and seek to arrange a medical assessment early. When negotiating a physician's visit, it is always better to be calm and logical.

When the visit has been organized, prepare yourself and the person affected by reviewing the medical history and the symptom well beforehand. It is also important to prepare a set of questions so you can approach the visit with clarity and get the best out of it.

In the next part, we will look at the differential diagnosis of dementia, and look at other reversible conditions that may mimic these symptoms. We will also talk about what tests your doctor may order.

See you in the next section.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2012 Mohan Kumar

Comments

Jaye Denman from Deep South, USA on June 06, 2013:

This is a tremendously important article, Docmo, because the numbers of elderly people suffering from some type of dementia continue to increase. More and more family members will be called upon to share in the care of a parent with dementia.

I was my mother's primary caretaker during the last three years of her life when she was diagnosed with Alzheimers Disease, and personally know the importance of caring for one's self when in the carer role. It reminds me of that warning the flight steward gives passengers on board a plane before takeoff--that adults should put on their oxygen masks before trying to place them on children or other dependent passengers. You're no good to someone else unless you are physically and emotionally equipped to handle the responsibility. Anyone approaching this situation should check out respite programs or talk with other relatives about taking turns helping out in order for the primary caregiver to have a periodic restorative break.

Mom did not resist seeing the doctor, and she wanted to know the prognosis so she'd be aware what to expect. She recalled an older relative who had the disease and told me, "In the late stage, it will be worse on you than it will be on me." She was a one-in-a-million person who lived those years without complaint, even when she lost the ability to feed and dress herself, then to walk. I would not trade the opportunity I had to care for my mother for anything.

Since there is a history of dementia in my family, I feel as though the Sword of Damocles hangs over my head as I approach the age of 70. I do my best to use my "little gray cells" and keep them active by reading, researching, writing, solving puzzles and socializing in hopes that I can stave off memory loss. I try to keep abreast of AD research and hope that a successful new treatment will be developed soon.

Voted Up+++

Jaye

Pharma712 on January 15, 2013:

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Mary Hyatt from Florida on September 17, 2012:

One of my greatest fears is developing Dementia. I am told there are diagnostic tests now. It is a very sad thing for the caregivers who really give up their lives in order to care for these poor people.

I voted this Hub UP, etc. shared, pinned and tweeted.

Rema T V from Chennai, India on September 12, 2012:

At a time when I was just looking for advice in this direction, I came here and cannot tell you how confident I have become after getting an idea about dementia. I did not 'google' the term too-was just thinking of it-because my father has symptoms, exactly as you have mentioned here.

He is 87 and it is very sad to see a very active man once who used to recognize people by their first name after years of meeting them is now unsure of himself. So very soon I'll be donning the role of a care giver.

He was quite okay till July 2012, but in the last one month I have seen many changes in him. He recognizes his immediate family like my mother, my children and I but doesn't seem to remember many things.

It is even worse when he asks me why he is going through this, why he is not able to remember simple things. He nods and waves to his friends he sees every morning during his walk but doesn't remember who they are and so the others are not able to guess that he has some serious problem.

The first thing I did after reading this hub was to fix up an appointment with a geriatrician, known to us for many years. I am so thankful to you for all this information which has really helped me get a fair idea about the condition. I was not aware how serious his condition was (it is not really very bad as yet), so was postponing a visit to the doctor.

Thanks very much Mohan for your kind help.

Cheers, Rema.

ignugent17 on September 12, 2012:

I am not ready if one of my family will have this. It is hard to accept they will slowly forget me.

Thanks for the information.

Voted up and useful!

Nira Perkins on August 18, 2012:

Great, informative article. This is important information that everyone should know, especially if you know someone or work with people that have dementia. You did a great job putting this together. Thanks for sharing.

Jenn-Anne on August 11, 2012:

A wonderfully informative and useful hub. I have family and friends who have been in the care-giver role and it is definitely not an easy one. This is a great resource for a family that may be embarking on the journey. Thanks for sharing!

Maria Jordan from Jeffersonville PA on August 07, 2012:

Mohan,

Have you heard of Guided Care... A partnership with the patient, caregivers, nurse and physician.

You write a sensitive and meaningful review, easy to understand, comforting to read if in the situation. I am glad to be catching up, even more so when I find myself in your "hood".

Voted UP and UABI. Hugs, Maria

Jessee R from Gurgaon, India on August 07, 2012:

Dementia can be agonizing and can its toll on the carer... the key here I believe is patience...

I knew it as a serious illness but you hub in its detailed brilliance has helped me educate myself...

Thank you for this

Jennifer Stone from the Riverbank, England on July 11, 2012:

This a really well written account of how to care for people with dementia, a subject close to my heart! Great advice throughout, voted up and all sorts, and shared! Thanks! Jen

Shauna L Bowling from Central Florida on July 10, 2012:

Docmo, thank you for this informative article. My favorite aunt, also my Godmother, died 3 years ago of dimensia. She lived a good life and had other family members to help her and be with her thru the end.

What is the difference between dimensia and Alzheimer's? They seem to be the same, but with different names.

Is dimensia hereditary? My parents are in their mid seventies (and in better health than many people my age (55) - no medication, no ailments, etc.) very active and eat right, but I worry.

I look forward to the rest of your series. BTW, you mentioned "your line of work". What is it you do for a living?

Peg Cole from Northeast of Dallas, Texas on July 09, 2012:

I like your approach to patient care and your holistic view of their treatment. It is so true that the patient's illness or disease affects the caregiver as well. I'm lucky to care for two elderly family members who for the most part are still able to function on their own at 87 and 92. They are homebound but still maintain their personal hygiene, cook meals, dress and care for their pets with minimal assistance. Our family doctor who cared for us for over 50 years (even delivering my older brother in 1949) was of this same nature and it was a blessing to have someone look after us who saw the whole picture rather than view us as a disease. RIP Dr. John H. Richards of Fort Worth Texas, a kind and compassionate healer who cared for 4 generations of my family. Many blessings to you in your role as medical practitioner and thank you for sharing your knowledge on line.

Ruby Jean Richert from Southern Illinois on July 03, 2012:

This one really hit home with me. My sister Bea displayed signs of dementia. When finally diagnosed, The MRI detected a tumor that was inoperative. Thank you for sharing your expertise in the field of medicine. Cheers my friend

shalini sharan from Delhi on July 03, 2012:

Dementia actually is becoming common, however as you pointed out the underlying factors it became easy to comprehend, nicely done

voted up and shared

Martie Coetser from South Africa on July 03, 2012:

Excellent article by a PRO! I need this one in my personal library. Thank you, Docmo.

Oh, and how I fear all mental diseases.... In fact, I fear ALL diseases!

Janine Huldie from New York, New York on July 03, 2012:

One of my grandfather's (on my dad's side) had dementia and everything you said really hit home on the topic of dementia and how to care for a person with this disease. Will be sharing and voting this up too!

iamaudraleigh on July 03, 2012:

Thank you for bringing Dementia to our attention and making the info easy to read. My grandmother had it, as does Micah's Grandmother. Tou are an excellent writer!

Christina Lornemark from Sweden on July 03, 2012:

You must be the kindest man and also the best possible doctor! You have done a very informative hub Docmo, written in a way that show your professionalism as a doctor who can see the whole picture and the whole person and not only the condition. Dementia is a nightmare for the relatives and it is so important to make the most of the early stages. When my mother was in the first stages of dementia, the changes were so small and came during a long time, and the thing I regret the most is that I didn't talked more to her while she was still here in her mind. We will never know when the last time is, until afterwards. Thanks Docmo, for writing this! It means a lot to me and I am sure it will be useful for so many others too.

Voted up, and pressing all appropriate buttons!

Tina

Amy Becherer from St. Louis, MO on July 03, 2012:

Immediately following my mom's bypass surgery last summer, she began with memory loss and sundowner's. She rallied some, but is now experiencing a dramatic inability to care for herself. Independent by nature and an OCD sufferer, she gets up all night to check the daily medication checklist I make up for her to easily keep track of taking her meds. Recently, I took her to the doctor for a "bulls-eye rash" following a tick bite, as I recognized it as possible Lyme disease. Her internist put her on Doxycycline, 100 mg for 10-days. I had to add these into her daily list of meds for those 10-days. I had to make two (40-min) trips one-way to her home two nights in a row, as she was completely confused. Every day she calls me to try to figure out why she is taking the meds and how to get more, even though I've assured her that the 10-days will be enough, unless the doc decides differently. Yesterday, she asked me to explain why she has the med sheets and what is their purpose.

My mother's personality, however, is very sweet, patient and kind. In fact, far more than when she was independent. I have to remind myself that the way she treated me growing up, with suspicion and incorrect assumptions, is separate from what is happening now and that my mom needs me. What was, no longer is. One of the saddest results of her brain injury is her panic and fear at her awareness of her decline. That is always foremost in my mind. This is the last thing my mother wants. Her greatest fear in aging has always been in becoming a burden for anyone. It would be a deceptive lie to say that this condition does not burden others, yet, walking away is not an option for me, as I could not live with myself. There are no guarantees in life. And, no matter how much we love and pray that our loved ones live long and die peacefully, reality tells a far too common story otherwise.

With the increasing numbers seen falling to dementia today, Docmo, your article is a lifeline for those struggling to meet the needs of loved ones requiring assistance. Just last week, my mom got rattled and took two days of her meds on the same day, which includes BP meds. Luckily, she suffered no consequences, but it is apparent than sooner rather than later, she will be unable to remain living on her own. This directive is a lifeline and I look forward to the rest of the series. Thank you

Michelle Liew from Singapore on July 03, 2012:

Agree with that..the worst case is with someone eating their own waste matter or wearing their underwear out shopping. Knew of someone who did the latter. When their family keeps scolding them harshly, it wosrens things. Seriously need to be empathetic.

Tanuka Bhattacharjee from Cupertino on July 03, 2012:

Very informative hub..seriously Dementia is becoming common with time. Few months back my friend lost his father as he got lost while coming back home after a walk with his mom while she was busy taking change some money in a fruit shop for the banana she bought. After one week of intense search they recovered ....It was really sad.

Sushmita from Kolkata, India on July 02, 2012:

This is a very helpful hub and thank you for writing it. You have gone into details to help people who are at the threshold of suspecting dementia know, how to prepare for it. Very well written. Voted up useful and sharing too.

Daisy Mariposa from Orange County (Southern California) on July 02, 2012:

Mohan (Docmo),

Dr. Kumar, thank you for presenting the information about dementia in a manner that is easy to understand by a layperson.

Too frequently, when one seeks information online regarding a medical condition, the information that one finds is either written for persons in the medical profession or the author talks down to his audience.

You have spoken with your audience. Thank you for that. Thank you, too, for not forgetting the caregivers and the carers.

Yourglobalgirl from UK on July 02, 2012:

A very useful and well written hub. Thanks

JP Carlos from Quezon CIty, Phlippines on July 02, 2012:

This is a very useful hub. It takes much patience for the family of people with this illness. It can be frustrating and can be draining. Support is very important.

Michelle Liew from Singapore on July 02, 2012:

Great one, Docmo. My great aunt has this condition - unfortunately those around her aren't being very supportive. I'll forward this to them!

Becky Katz from Hereford, AZ on July 02, 2012:

Very interesting and helpful hub. I do not worry about my husband yet but we have been told he could possibly have Parkinson's disease and watch for things connected with that. He has diabetes, high blood pressure, seizure disorder, PTSD, severe depression, and heart disease. Most of these are service connected from exposure to Agent Orange. The seizure disorder is from blows to the head while in the service. He had his nose almost completely removed by shrapnel. They rebuilt it using kevlar.

Suzie from Carson City on July 02, 2012:

I thank you very much for this wonderfully written article about caring for dementia sufferers........and I hope I never ever have to use it.

I have seen via friends and other family members, the sadness of this disease. The worry and pain and heartache.

How devastating to watch someone you love lose the essence of who and what they have been through their entire life.

You have given this information perfectly and of course, professionally. Thank you......UP++