As a long-term caregiver for my own mother, I absolutely understand the tremendous disbelief, denial, frustration, fear, and anger associated with being a caregiver.
By Judy Berry
Understanding dementia--its various causes and likely progression and consultation with a physician about early pharmacological interventions--are essential to maintaining the highest possible quality of life for both the person diagnosed with dementia, their primary caregiver, and the entire family.
Dementia is a general term used to describe the symptoms of short-term memory loss; confusion about time and place; inability to perform tasks that were previously easy to carry out; and eventually the inability to perform everyday activities of daily living.
Types of dementia. There are many causes of dementia of which Alzheimer’s disease is the most well known and one of the primary causes. Vascular or multi-infarct dementia is probably the next largest cause of dementia; often persons are diagnosed with both. The person suffers the loss of short term memory and becomes confused when trying to complete common tasks. The major difference between these types of dementia is that decline tends to be slower and with a steadier pace with Alzheimer’s disease, while those with vascular dementia experience more sudden declines characterized by longer periods with no decline and then additional sudden declines.
Importance of early diagnosis. It is EXTREMELY important for anyone experiencing any of the symptoms of dementia, for example, memory loss, confusion, personality changes--to seek an appropriate medical diagnosis. Some diseases--uncontrolled diabetes, some thyroid conditions, medication side effects and many others--mimic symptoms of dementia, yet are completely curable and reversible.
Moreover, the early diagnosis of Alzheimer’s disease, vascular dementia or other types of dementia facilitates early interventions that can maintain the highest possible quality of life and considerably delay the onset of debilitating symptoms.
Dementia as a family disease. As a long-term caregiver for my own mother, I absolutely understand the tremendous disbelief, denial, frustration, fear, and anger associated with being a caregiver for someone with a disease that appears to rob us of the person we have known and loved because they lose the ability to communicate in a way we understand. I know first-hand how hearts are torn and emotions worn thin trying to deal with feelings of helplessness and hopelessness. Dementia is a family disease: as a caregiver or family member you MUST take care of yourself. Do not be ashamed to ask for help!!!
Suggestions for caregiving. Here are some suggestions that will help make your journey with your love one the best it can be.
As dementia progresses a time will come when it is no longer helpful to try to help the person’s memory. Indeed, attempts to do so often reinforce their fear and anxiety and provoke their anger. They may believe that you are questioning their ability to remember or they can become introverted as they realize their inability to respond appropriately and become too embarrassed to participate in conversations.
- Learn as much as you can about the disease and its progression so you can recognize and accept changes in behavior. Deterioration is the progression of the disease--and it’s not personal.
- Always validate their feelings! People with dementia have the same feelings and emotions as we do, right up until the time death. However, they can no longer communicate their feelings in a way we can understand. Often they are scared to death and don’t understand what is happening to them. They become frustrated and act out when they cannot be understood.
There is always an unspoken need, feeling or fear behind an inappropriate or aggressive behavior! We have to become detectives to discover the need.
- Learn to live in their world. Wherever they think they are and whatever they perceive is happening is real to them; any attempt to bring them to our reality is frustrating. They feel as though you are telling them their thoughts are wrong. During the early stages of the disease this also reminds them that there is something very wrong with their memory, which is scary--and they will almost always react negatively.
- Learn to read their non-verbal communication and VALIDATE the person they are and the feelings and emotions that they are displaying in the moment. After listening to many residents with this disease it has become obvious that they ARE very much still in there, with the same feelings and emotions they have always had. You need to recognize those feelings and always validate them. They deserve to have ALL their needs met and often emotional needs go unrecognized and unmet as the caregiver perception is that the person with dementia no longer is the same person or doesn’t understand anything, therefore the emotional and spiritual needs are gone or we as the caregiver are not comfortable affirming them. To the contrary we see emotional needs escalate with the progression of the disease as they lose the ability to communicate and they become more scared and confused.
- Always ask yourself this question: “Does it really matter?” Does it really matter when a loved one with dementia does something that we deem inappropriate or evidences a definite dislike of or disinterest in a particular activity you want them to do—for example, taking a bath right now! No one ever died as a result of not bathing, or failing to eat or sleep according to a specific schedule. Be respectful of their choices, as long as they are possible and not dangerous.
- Always treat the person with dementia with the dignity and respect due to an adult. Although their behaviors may seem childlike, they are still an adult. Involve them in as many activities as they can do without becoming frustrated. Invite them to participate, at their pace, and encourage them to share the talents they still have. Surprisingly, many people with middle-stage dementia can still play instruments they have played all their lives. They won’t remember they can play, but if you hand them the instrument and encourage them, often they begin to play right away--which is an incredible self-esteem builder.
- Don’t ask direct questions. Instead of “What are your children’s names?” you might say, “Tell me about your children.” When a person with dementia says they want to go home, ask them to tell you about home. You’ll find that what they are actually seeking is their home as a child or even just a place where they were comfortable and well.
- It’s essential to understand that the person had a daily routine that has been now totally disrupted by their dementia. Learning about what they did and keeping them active during those times, assuring them that things are being taken care of or asking them to help with some familiar chores can help to reduce or eliminate the agitation, commonly known as “sundowning.” Sundowning usually occurs at the time of the day that most people are moving about--coming home from work, fixing dinner, and performing chores. Recognizing these activities and validating their feelings can reduce the frustration and anxiety of the person with dementia and their caregiver.
For more information contact Judy Berry, CEO, Lakeview Ranch Specialized Dementia Care at 800-546-5175 or at our websites Lakeview Ranch and Dementia Care Foundation.
Judy Berry is the founder and CEO of Lakeview Ranch. Lakeview Ranch provides a unique model of specialized dementia care for those with aggressive behavior. The model focuses on prevention, rather than treatment to manage behavior. Judy is also the Executive Director and founder of the Dementia Care Foundation.
Read More on the Alzheimer's Reading Room
- Communicating in Alzheimer's World
- What’s the Difference Between Alzheimer’s Disease and Dementia
- Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
- Advice and Insight -- Alzheimer's Reading Room
- The Mini-Cog Test for Alzheimer's and Dementia
- Urinary Incontinence -- How We Beat Alzheimer's Incontinence
Original content Bob DeMarco, the Alzheimer's Reading Room