Special Challenges of Caregiving for Alzheimer’s and Dementia

   Special Challenges of  Caregiving for Alzheimer’s and Dementia

It’s World Alzheimer’s Month, which is a good time to consider the special challenges of caregiving for those with  Alzheimer’s and other forms of dementia.

First, About Care Receivers

To better understand the challenges and pleasures of caregiving for aging persons, it helps to better understand aging care receivers. As people grow older, they need to remain “bonded” to family members or close friends whenever possible. The need to bond is often greater in older women than older men because men more often substitute recreational and work related activities for interpersonal relationships. Either way, living alone without a support network is both lonely and stressful. For example, people who live alone are more likely to become substance abusers.

Family, friends, neighbors and formal care providers help aging people with illness or disability cope more effectively with these situations. Specific physical activities of daily living (ADLs) for which help may be needed include:  

  • bathing – sponging, and bathing in a bathtub or shower
  • bowel and bladder control – including caring for a catheter or colostomy bag
  • dressing – putting on all items of clothing including fasteners, braces, etc.
  • eating – feeding oneself: from dishes, a feeding tube or by vein
  • movement – ability to get in and out of bed, a chair or wheelchair, with or without supports such as walking canes, walkers, crutches and motorized equipment
  • toileting – getting to and using the toilet with good associated personal hygiene
The more activities an individual has difficulty with, the more likely it is that he or she needs continuous help.

Psychosocial Aspects of Receiving and Giving Care

Perhaps the most difficult parts of older persons receiving care is having to part with being independent and self-reliant, both of which are conditions aging persons have lived with all of their adult lives. As they accept their need for help, they may develop a decreased feeling of self-worth In fact, self-reliance is so important to aging persons that it often makes it more difficult to give them the help they can benefit from. Therefore, instead of the caregiver receiving the appreciation that he or she expects, they may experience anger and a lack of appreciation from the care receiver. This may create a cycle in which the caregiver feels negatively toward the care receiver, which the care receiver can sense, and then the care receiver feels even more negatively toward the caregiver.

Although persons with high self-esteem are less willing to accept help than persons with low self-esteem, it is desirable to support the psychological needs of persons with both high and low self-esteem. Although persons with high self-esteem are often more difficult to care for, it is thought by many that their fight for independence contributes to their longevity.

Dementia: A Special Challenge Related to Caregiving

Although there is no cure for Alzheimer’s and many other illnesses that cause dementia (impaired mental functioning), much can be done to make life easier for both the affected person, and the caregiver. While Alzheimer’s is a major cause of dementia, not all dementia is a result of Alzheimer’s. In Alzheimer’s, physical ability is often good until the end stage, and the condition occurs as often in men as in women.

Persons with dementia have decreased memory and decision making. It is often not noticeable at first because they may become very skillful in hiding the problem. However, the condition progresses steadily and eventually becomes noticeable.

Decreased memory is followed later by:
           –  increased difficulty in finding words to express oneself

           –  poor judgement

           –  worsening social relationships

Other common signs are:
  • depression
  • paranoia (unjustified suspicion)

Persons with Alzheimer’s and other incurable dementias have a loss of intellectual functioning which gets worse over time. For example, they develop a decreased ability of performing routine tasks, difficulty learning, and loss of language skills in addition to decreased memory, and changes in personality and behavior. However, dementia is not a part of normal aging. Although many older people develop some forgetfulness, it does not interfere with daily living or cause disability.

Learning to live with dementia is difficult for the affected person, his or her loved ones, and the caregiver or caregivers. Because there is so much information to share about the challenges of living with dementia, and caregiving, we will continue this discussion in the months to come. Until then, know that while experiencing a family member or friend with dementia is very challenging, and often also painful, with understanding and support from loved ones and other caregivers, the quality of life for all involved can be much better than would otherwise be possible.

Remember the Health Power motto or tagline:  Knowledge + Action = Power!®