Alzheimer’s and Dementia: How A Caregiver Survives Caregiving
You are becoming concerned. You see your loved one struggling to remember everyday people or places. They are moody, withdrawn, confused and unable to find simple words or do simple tasks. The diagnosis you feared may be around the corner – Alzheimer’s and Dementia. What do you do? What if your concerns and fears are confirmed? What about you?
Locally, we receive inquiries every week from family members who are challenged by similar discoveries. They see the changes taking place with their loved one but often deny the seriousness of the early signs and symptoms on display, preferring to believe that the person is ‘getting old’ or ‘forgetful at times’. But as the signs become more prevalent and frequent, people generally seek advice from their family, friends, their physician, or community resources.
Once the behaviors and mood of the loved one intensify and cause more concern, they become the focus of discussion and from there all attention is centered on the loved one’s changes and needs. As weeks and months roll on, more is demanded of you to care for your loved one to the point where your life is completely enveloped by the care you must provide.
It’s a common story, and a sad one. It is very difficult to watch your loved one regress and lose their unique persona but it is also sad that caregivers do not seek the help and relief they need during the stages of early onset Dementia and Alzheimer’s. Emotions, rationalizations, and just plain overload of work frequently take over and result in ‘mental blinders’ where the caregiver only sees his or her responsibilities to provide care, often to the disregard and neglect of their personal needs.
They fail to see their own physician, eat poorly, interact less with the outside world, and lose sleep…all contributing to a toxic buildup of stress that compromises the health of the caregiver. A study conducted by Stanford University (2002) concluded that 40% of Alzheimer’s caregivers die from stress-related disorders before the person they are caring for. While statistics vary over years, it is vitally important to plan for your well-being in order to survive caregiving.
Families who call us express a range of questions and issues when they suspect early signs of dementia. Understanding what dementia is and having a clear picture of the early signs of dementia enables families to process, seek treatment for the loved one, come to terms with their own feelings, and make plans for the months ahead.
So what is dementia?
According to the Alzheimer’s Association, dementia is not a disease but a term used to describe a group of symptoms associated with a decline in thinking, memory and communicating severe enough to reduce the person’s ability to perform everyday activities. Alzheimer’s is the most common and prevalent type of dementia, accounting for more than 60% of all cases. The second most common type is vascular dementia which occurs after a stroke. There are many other conditions that can cause symptoms of dementia, several of which are reversible and include thyroid problems and vitamin deficiencies. In order for a true diagnosis of dementia to be present, no less than two of the following primary mental functions must be significantly impaired:
- Visual perception
- Attention and focus
Many seniors have memory loss but that does not automatically equate to having Alzheimer’s symptoms or dementia.
Alzheimer’s is a terminal, progressive brain disorder that causes a slow, insidious decline in memory, communication, and reasoning. It robs the individual of all ability to think and interact and leads to disorientation, personality changes, and confusion with dementia usually setting in during the mid and late stages of the disease. There is no known cause or cure however symptoms can be managed through medications and treatments if detected early.
What are some early signs of dementia and Alzheimer’s?
Many experts in the field including the Alzheimer’s Association post the following dementia checklist:
- Changes in short term memory – trouble with remembering what happened this morning but recalling events from years ago could be a sign. Memory loss includes asking for the same information over and over, forgetting where they left something, forgetting why they entered a particular room. This is different from forgetting names or things but recalling them later.
- Problems with words in speaking or writing – the person may not be able to explain things the way they want, can’t find the right words, use wrong words to describe something, or may stop in the middle of saying or writing something and unable to continue.
- Changes in following a plan or in working with numbers – this includes problems with balancing a checkbook or following a recipe, difficulty concentrating and taking much longer to do simple things than before.
- Mood and personality changes – the person may seem depressed, fearful or anxious, become easily upset with people at home or in social situations or become outgoing when normally shy.
- Become apathetic – the person may seem to lose interest in people or social activities, become listless and not want to go out.
- Poor judgment – this may include giving money to people for poor reasons or letting one’s personal appearance go or not keeping clean.
- Losing the ability to recall where things are – an early sign includes the inability to remember where things are kept, putting items in unusual places, accusing others of stealing money or personal items from them.
- Difficulty doing normal tasks –people with early signs of dementia find it difficult to complete daily routines, drive, find a familiar location, balance a checkbook or follow rules of a game.
- Confusion – this includes an inability to remember faces, dates, or interact normally with others.
- Trouble with visual images/spatial relationships – vision problems may include difficulty with reading, judging distances, not recognizing their own reflection in a mirror.
With a better understanding of the early signs and onset of dementia and Alzheimer’s symptoms, family members can take action sooner to get medical evaluation for their loved one. At this time of examination and testing, families need to consider a plan of care not only for the individual with dementia or Alzheimer’s but also for the primary caregiver. Too often, this just does not happen.
Resources like the Alzheimer’s Association, family physicians, social workers and other professional entities point to this as a crucial step in the long term plan that is missed or neglected – How to care for the primary caregiver.
What to do when faced with a diagnosis?
We suggest that building a support system and a care partner network become one of the first things families do when faced with a diagnosis of Alzheimer’s or dementia with a loved one. It’s the plan that keeps on giving.
Caring for someone with Alzheimer’s or dementia is not something that can be done alone for an extended period of time without consequences. The Family Caregiver Alliance notes that a person who provides care for someone with dementia is twice as likely to suffer from depression as a person who provides care for someone without dementia. Dealing with the dementia-related behaviors contributes to the development of depressive disorders in caregivers, with women experiencing symptoms of depression at twice the rate of male caregivers.
Just like the flight attendants say before takeoff “Reach up and pull down your oxygen mask, place it around your mouth and nose and breathe normally, then assist others around you.” Caregivers need to take care of themselves – and have a plan in place for the long haul – in order to take care of others. You must find ways to ‘inhale oxygen’ – get your needs met – or you will be out of breath and unable to provide the care needed by your loved one.
- Talk it out with family members – once the diagnosis is confirmed, convene a family meeting and decide the roles of each member and what each person will contribute to the situation – time, money, food, tasks, all the things that will be needed going forward. This will eliminate feelings of anger, resentment and jealousy among family members and help focus everyone’s attention to what must be done for the patient and for the primary caregiver.
- Be honest – caregiving is not easy no matter how much help is present. Acknowledge that this situation is terrible (for the patient and the caregivers) and avoid suppressing your emotions about it; this will, at the very least, be good for your own mental stability.
- Devise a respite schedule – caregivers need breaks, lots of them over the long course of care. If family members and friends are unable to spell you some relief, look into paid help through in-home care agencies or volunteer organizations. Atlanta Senior Advocates offers assistance in locating respite care in assisted living communities and can be a valuable resource to families and caregivers.
- Read, Listen, and Learn – you need to know what lies ahead. Read materials on Alzheimer’s and dementia to understand more about the conditions so you won’t be caught blindsided. Find resources online; the Alzheimer’s Association has a Caregiver Stress Checklist that will help pinpoint resources to assist you; join a support group to learn how others in similar situations handle the various duties and find balance.
- Stay connected to the outside world – continue with a hobby, exercise routinely, visit with friends, attend events, see a movie…the world does not stop and remain the same when you shut yourself off from it. No amount of guilt or moral imperative to provide care 24/7 should override your need (and dare we say right) to seek harmony in your life.
All these ideas do not make you self-centered or selfish, uncaring or unkind.
They will help you become a better you and a better caregiver.
After all, isn’t that what’s best for you and your loved one?
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