Learning To Give Full Attention
Care staff will need to allow themselves the time to sit beside a person and to be as fully present as they can. It is all too easy to be distracted, to be thinking about the next job that needs to be done and not to be focused fully on the here and now relationship. One volunteer visitor in a care home said the most important thing she offered was sitting down with residents, showing that she is here to stay rather than just hovering to get away.
Many people with dementia will sense when we are not fully present and are less likely to connect with us in any meaningful way if this is the case. If we are not paying full attention we might also miss simple movements or sounds from the person attempting to communicate something.
If you are going to sit with a person with dementia for longer than a few moments, consider the following: Your colleagues will need to know that you going to spend say 10 to 15 minutes in the persons room and should not be called away to another resident or task. You may want to take a book to read out to the person or a piece of music to play or perhaps something that you can do in front of the person such as folding towels. Make sure you are in the eye line of the person if they are lying in bed or staring in a particular direction.
Weigh The Burdens And Benefits Of Treatments
Talk with the medical care team about the burdens and benefits of using or refusing care treatments. Find out if the treatment will improve the person’s condition or comfort and for how long, and if it will pose excessive physical or psychological burdens. Compare any recommended treatments with the person’s wishes for end-of-life care.
Signs Of The Dying Process
As someones condition gets worse and they are within a few days or hours of dying, further changes are common. The person may:
- deteriorate more quickly than before
- lose consciousness
- develop an irregular breathing pattern
- have a chesty or rattly sound to their breathing
- have cold hands and feet.
These changes are part of the dying process when the person is often unaware of what is happening.
Also Check: Dementia Awareness Color
Stage : Very Mild Changes
You still might not notice anything amiss in your loved one’s behavior, but they may be picking up on small differences, things that even a doctor doesn’t catch. This could include forgetting words or misplacing objects.
At this stage, subtle symptoms of Alzheimer’s don’t interfere with their ability to work or live independently.
Keep in mind that these symptoms might not be Alzheimer’s at all, but simply normal changes from aging.
What You Can Do For Your Loved One
As an individual with dementia declines, you can help them by providing a loving and supportive presence. Sit with them. Hold their hand. Play music they enjoy.
One of the greatest gifts you can give your loved one is helping to get their affairs in order. Ensure that financial and healthcare powers of attorney are put in place, so you can make decisions when your loved one is no longer able. Look into funeral arrangements before you need them, so you dont need to make important decisions in a time of crisis.
Talk to your loved ones physician about the possibility of palliative care support in the home and hospice care when your loved one is ready.
You May Like: Does Bobby Knight Have Dementia
Preparing For The Difficult Late Stages Of Alzheimers Disease
In the early stages of Alzheimers, many patients retain the ability to function with some independence. Even as confusion and forgetfulness become more pronounced, they can still communicate verbally and engage in many activities of daily life, such as bathing, eating, and dressing on their own. As the disease progresses, though, most Alzheimers patients become completely dependent on their caregivers in all aspects of life. While this can be tremendously challenging for both patient and caregiver, there are things you can do to ease the transition and preserve the dignity and wellbeing of your loved one in the final stages of Alzheimers.
Even though your loved one may not be able to communicate verbally, its essential to provide them with a sense of dignity and well-being. Because someone with late stage Alzheimers experiences the world primarily through their senses, you can use sensory input to communicate when words are no longer sufficient. Playing your loved ones favorite music, providing gentle massage, brushing their hair, cooking their favorite meals, and displaying bright flowers and family photographs can all have a soothing effect, and communicate to the Alzheimers patient that they are safe and loved. Similarly, you can watch for non-verbal cues, such as facial expression, movement, and body language, to determine whether your loved one is experiencing pain or discomfort.
Stage : Very Mild Cognitive Decline
This stage may indicate normal age-related decline or the very earliest signs of Alzheimers disease. At this time, the afflicted person and possibly their close family members and friends may have a sneaking suspicion that something is amiss. However, even a person with Alzheimers at this stage is usually capable of hiding their slight impairment or explaining it away.
A little more forgetfulness could be due to natural aging, but unusual changes in mood, behavior and/or judgement typically indicate that something more serious is at work. Proactive individuals may seek answers from their primary care physician , but they are not likely to get the satisfaction of a definite yes or no at such an early stage. Instead, patients come away with a diagnosis of depressiona condition that shares many symptoms with Alzheimers and often occurs along with various types of dementia. Or, a patient may receive a recommendation to minimize stress, make lifestyle changes and pursue mentally stimulating activities to keep the brain active and healthy.
Read Also: Ribbon Color For Alzheimer’s
Physical Difficulties In The Later Stages Of Dementia
The physical changes of late-stage dementia are partly why the person is likely to need much more support with daily living. At this stage they may:
- walk more slowly, with a shuffle and less steadily eventually they may spend more time in a chair or in bed
- be at increased risk of falls
- need a lot of help with eating and so lose weight
- have difficulty swallowing
- be incontinent losing control of their bladder and bowels.
The persons reduced mobility, in particular, raises their chances of blood clots and infections. These can be very serious or even fatal so it is vital that the person is supported to be as mobile as they can.
What Are Specific Care Needs At Each Stage
An individual may not require care assistance after the initial diagnosis of dementia, but that will change as the disease progresses and symptoms become worse. There are about 16 million unpaid caregivers of people with dementia in the United States. While many caregivers are providing daily help for family members, they also hire someone to help. There are many options of care assistance, such as in-home care, adult day care, and nursing home care. There is also financial assistance available.
Early Stage DementiaAs mentioned above, in the early stage of dementia a person can function rather independently and requires little care assistance. Simple reminders of appointments and names of people may be needed. Caregivers can also assist with coping strategies to help loved ones remain as independent as possible, such as writing out a daily to-do list and a schedule for taking medications. Safety should always be considered, and if any tasks cannot be performed safely alone, supervision and assistance should be provided. During this period of dementia, its a good idea for caregivers and loved ones to discuss the future. For example, a long-term care plan should be made and financial and legal matters put in place.
Recommended Reading: Smelling Farts Can Prevent Cancer
Stage : Moderately Severe Cognitive Declinemoderate Dementia
In this stage, deficits are of sufficient magnitude as to prevent catastrophe-free, independent community survival. The characteristic functional change in this stage is early deficits in basic activities of daily life. This is manifest in a decrement in the ability to choose the proper clothing to wear for the weather conditions or for everyday circumstances. Some persons with Alzheimers disease begin to wear the same clothing day after day unless reminded to change. The mean duration of this stage is 1.5 years.
The person with Alzheimers disease can no longer manage on their own. There is generally someone who is assisting in providing adequate and proper food, as well as assuring that the rent and utilities are paid and the finances are taken care of. For those who are not properly supervised, predatory strangers may become a problem. Very common reactions for persons at this stage who are not given adequate support are behavioral problems such as anger and suspiciousness.
Cognitively, persons at this stage frequently cannot recall major events and aspects of their current life such as the name of the current head of state, the weather conditions of the day, or their correct current address. Characteristically, some of these important aspects of current life are recalled, but not others. Also, the information is loosely held, so, for example, the person with moderate Alzheimers disease may recall their correct address on certain occasions, but not others.
Stage : Moderately Severe Cognitive Decline
Also known as moderate or mid-stage AD, this is where symptoms become obvious and begin to seriously affect ones day-to-day functioning. Frustrations mount for most patients and their close family members, friends and employers. Those in this stage are painfully aware that they are not functioning normally, and it understandably makes them angry and possibly even more confused. They often take their exasperation out on the people they feel safest with, such as spouses or adult children. Of course, it is these very people who step up to help and take on the difficult role of caregiver.
Major gaps in memory and requiring assistance with activities of daily living are common at this point in the disease. Patients are often unable to recall their current address, telephone number or where they graduated from school, and they can become confused about the date, their surroundings and even the current season. Easier arithmetic, such as counting backward from 20 by twos, is suddenly a serious challenge. Poor judgement begins to take over and a patient may have difficulty dressing appropriately for events, weather and even the correct season. The diseases effects on judgement can make seniors especially vulnerable to undue influence, scams and fraud at this and later stages.
Read Also: Dementia Color Ribbon
How Long Will A Person With Dementia Live For
Whatever type of dementia a person has, their life expectancy is on average lower. This is why dementia is called a life-limiting condition. This can be very upsetting to think about.
However, its important to remember that, no matter how a persons dementia changes over time, there are ways to live well with the condition.
Good support can make a huge difference to the persons quality of life at all stages of dementia.
How long a person lives with dementia varies greatly from person to person. It depends on many factors, such as the ones listed on The progression and stages of dementia page.
Other factors include:
- how far dementia had progressed when the person was diagnosed
- what other serious health conditions the person with dementia has such as diabetes, cancer, or heart problems
- how old the person was when their symptoms started older people are more likely than younger people to have other health conditions that may lower their life expectancy. A person in their 90s who is diagnosed with dementia is more likely to die from other health problems before they reach the later stages than is a person diagnosed in their 70s.
Stage : Age Associated Memory Impairment
This stage features occasional lapses of memory most frequently seen in:
- Forgetting where one has placed an object
- Forgetting names that were once very familiar
Oftentimes, this mild decline in memory is merely normal age-related cognitive decline, but it can also be one of the earliest signs of degenerative dementia. At this stage, signs are still virtually undetectable through clinical testing. Concern for early onset of dementia should arise with respect to other symptoms.
You May Like: Alzheimer’s And Dementia Ribbon
How Can Healthcare Professionals Help At This Stage
Healthcare professionals can explain these changes so you understand what is happening.
Healthcare professionals can also take steps to reduce the persons pain or distress, often using medication.
If the person cant swallow, then medication can be provided through patches on the skin, small injections or syringe pumps that provide a steady flow of medication through a small needle under the persons skin. Speak to a GP or another health professional about this.
Life Expectancy By Stage Of The Disease
The average number of years a person lives with Alzheimers disease is about 10. Keep in mind, however, that theres a gap between when symptoms begin and when a diagnosis is actually sought. The first symptoms of Alzheimers diseaseforgetting names, misplacing items, difficulty concentrating at work or performing simple tasksarrive an average of almost three years before the diagnosis is made.
The scale most commonly used by health professionals for the stages of dementia is the Global Deterioration Scale , also called the Reisberg Scale. The table below shows a patients average life expectancy by the stage of dementia. These are averages based on studies of large numbers of Alzheimers patients.
|Life Expectancy By Stage of Alzheimers / Dementia|
|Stage 7: Very Severe Cognitive Decline||1.5 to 2.5 years||2.5 years or less|
What Activities Work For People With Advanced Dementia Some Practical Suggestions
Sarah Zoutwelle-Morris is a visual artist living in Holland. She describes a range of different practical activities which might hold the interest or attention of a person in the later stages of dementia:
- Tapping, patting: make a rhythmic noise together on the table using a stick or spoon, following each others rhythms
- Stroking: massage someones hands with scented cream or oil, giving them a chance to do the same to you if they want pet a live or stuffed animal, or smooth a cloth on a flat surface or the persons lap
- Pressing: press glued paper down so it stays in place stamp with block print or a rubber stamp press the flat of your hand to theirs, gently giving and resisting in turn, taking your clues from them
- Pulling: pull the wrapping paper off a package, pull clothes off a doll, or pull on a thick cord with knots
- Folding: fold dish towels, clothes, bed linens, paper, newspaper, clay or dough.
- Pick at: peeling paper, a torn out hem, little threads make a yarn card with easy knots to untie or things to pull through loops, or unravel a ball of wool
- Wrapping, concealing: dress a doll or stuffed animal wrap an object in cloth or string, or wrap a present.
Recap: Preparing For The Late Stage Of Alzheimers Disease
Alzheimers and other dementias are not linear thats part of the unique heartbreak of the disease. There are early, middle and late stages, but each day can vary wildly from the next.
Alzheimers San Diego recently held a special workshop, Preparing for the Late Stage, led by Rebecca De Campos, MSW. Her goal was to provide a general idea of what to expect in this final stage, explore care options and to empower care partners to find new ways to connect with their loved ones.
Its easy for care partners to feel frustrated and overwhelmed as the disease progresses. But we try to encourage and guide the care partner to focus on what the person living with dementia still can do, rather than what theyve lost, Rebecca explained. There can still be good days full of humor and joy, even in the end.
Symptoms of the late stage of Alzheimers and other dementias include limited verbal communication, difficulty chewing and swallowing, reduced physical activity and mobility and the need for 24-hour supervision. However Rebecca stressed that people in the late stage still have many strengths and abilities. They have an awareness of their surroundings and can respond to tone and emotion. They can also connect through non-verbal communication and sensory stimulation.
If a bowl of ice cream is going to bring that sense of joy to them, then I say go with it, she said. Let them overindulge and enjoy!
You May Like: Neurotransmitters Involved In Alzheimer’s
Staying Connected To The Person With Alzheimer’s Disease
When persons with late-stage Alzheimer’s have lost most of their cognitive abilities, they experience the world through their senses. Although you may not be able to communicate with them verbally, there are many things you can do to show the person reassurance and love. Focus on what the person is still able to do or what the person still enjoys.
Alzheimers & Body Problems End Stage Dementia Signs
As mentioned, those in the late stage of Alzheimers disease suffer from several common struggles.
One of these struggles is problems with skin integrity. These skin problems include:
- Bed sores
Bed sores are a major problem because of the loss of mobility and ability to walk . The loss of mobility for those in the late stages of Alzheimers disease leads to extended periods either sitting or laying in bed. This, coupled with urinary incontinence can quickly lead to bed or pressure sores, which are difficult to cure.
Our advice to help prevent bed-sores is to use items like pillows, and to carefully reposition them every hour.
Another struggle that results from the lack of mobility are problems with the feet and the lower legs. Limited blood flow and fluid retention require careful maintenance of both the lower legs and feet to prevent issues such as dryness, cracking and wounds.
Our advice to help prevent feet and legs issues is to schedule Regular baths, nail trimming, foot rubs, and lotion prevent some of these issues.
The basic tasks of eating and drinking also becomes precarious. Drinking liquids become a problem because people with Alzheimers disease have difficulty swallowing thin liquids and foods. The result can be that they ingest the food particles or liquids into their lungs, which leads to aspiration pneumonia. Working with a speech therapist, and following their guidance, can sometimes be effective.
Recommended Reading: Does Medicare Cover Respite Care For Dementia