Challenging Dementia Care and Seeking Support Groups

By: Rosemarie Tamunday Casanova — RN, BSN, MHA

challenging dementia care cover design
Graphic Artwork by Tom Banogon

With increasing age comes an increased need for care, which may either be rendered in the form of personal care, or just companionship, in order to remain active, happy, healthy and strong.

While this may often be the case ordinarily, for the elderly living with dementia or Alzheimer's, it is even more challenging to cope with their every day tasks.

Dementia is a syndrome which comes with a wide range of problems for both the person living it and their Caregivers.

Some of the challenges faced by people living with Dementia include:

For people living with Alzheimer's or other forms of dementia, carrying out the above seemingly easy tasks is no joke, and they often have an even greater need for such care that is specialised and unique to them.

This specialised care is what helps them to stay active and bubbly, which effectively makes them more socially interactive and less prone to depressive states.

However, taking care of an elderly loved one who has Alzheimer's or dementia comes with its own set of specific needs and challenges.

elderly couple holding hands together
Photo by Picspree

Why there is need for Seniors with Dementia to receive specialised care

About 5.7 million individuals in the United States are currently living with dementia, according to the World Health Organisation, and the numbers are expected to rise to nearly 14 million by 2025.

It is estimated that over 16 million americans are involved in the provision of care (unpaid care) for individuals with Alzheimer's disease or other forms of dementia.

Among people who are aged 70 years, 61% of those living with Alzheimer's dementia are likely to to die before 80 years of age in comparison with only 30% of those without Alzheimer's — this rate is twice as high.

Figures from the Alzheimer's association show that:

Individuals aged 65 and above survive 4 to 8 years on the average, following a diagnosis of Alzheimer’s dementia, yet some of them live as long as 20 years of age with Alzheimer’s.

This is a reflection on the slow and uncertain progression of the illness.

83 percent of the help received by the elderly in the United States comes from their family members, friends, and other unpaid caregivers.

Almost a half of all the caregivers who provide help to the elderly do so for individuals living with Alzheimer's or another form of dementia.

Statistics also show that:

caregiver feeding an elderly man
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Approximately 1/4 of dementia caregivers are referred to as "sandwich generation" Caregivers, which means that their care is not only towards an aging parent, but is also for children aged below 18.

Out of the gross lifetime costs of caring for someone living with dementia, about 70% is shouldered by family members.

This is either through out-of-pocket payments on health and long-term care expenses, or from the given value of unpaid care.

Alzheimer's and other forms of dementia takes a devastating toll on the caregivers.

In comparison with caregivers of individuals who don't have dementia, about twice as many caregivers of people living with dementia indicate considerable financial, emotional, and physical problems.

How then can you work through the difficulties that you come up against?

How Elderly Caregivers can cope with Dementia Care

A lot is required of anyone who is caring for a senior. However, since the damage caused by dementia and Alzheimer's disease is progressive and usually unique, the duties of an elderly caregiver in these kind of situations can be quite extensive.

The caregiver must not only provide the senior individual with a variety of care services, but also, a variety of challenges are faced by the caregiver themselves. This is most especially true in the case of family caregivers.

An example of some of the duties expected of an elderly caregiver in this instance include:

senior woman caring for her sick husband
Photo by Picspree
  • Physical care and basic needs such as bathing and grooming, daily physical activities like walking, eating, etc.
  • Cleaning and housekeeping services, including cooking meals and doing the laundry.
  • Nutritional and medical care including paying attention to their nutritional needs, fluid intake, allergies, other medical needs, etc.
  • Social interaction especially in providing much needed companionship to prevent them from sliding into depression and isolation.

In addition to the regular requirements of elderly care, seniors with dementia also have some unique needs which these caregivers have to provide.

Some of these responsibilities include:

Emotional support

Caregivers should necessarily provide just as much of emotional support as they do for the physical.

They may have to deal with an elderly person's possible anxiety, and have to help them cope with the fact of their dementia diagnosis.

They should also be able to allay anxiety and stress, remain calm, and be as patient as possible when a senior one is upset.

Caregivers must also be actively involved in almost every aspect of a senior's care.

This would includes communication between medical teams, the family members and loved ones, the other members of the senior's care team, etc. They must be able to also effectively communicate with essential elements of a senior one's care.

Education

Every elderly caregiver must have some form of training much more Caregivers of individuals living with dementia.

They must be educated concerning the illness, first and foremost.

And for many family caregivers, having this education may also mean having to make a decision about looking for specialized care in another way or location.

Every caregiver must be able to necessarily plan and look ahead, being always prepared for every eventuality.

caregiver preparing cookies for elderly woman
Photo by Picspree

Ability to Adapt

It is important that caregivers must gain a special ability to assess situations when it comes to special care for seniors with dementia.

They must also be able to make certain judgment calls, as well as take note of even the slightest changes in the behaviour of a senior.

In other words, caregivers must have to capacity to adapt and change as necessary.

They must be able to also evaluate a senior's environment and sorroundings for any safety hazards and any potential risks that may be present, as well as note any new or worsening problems.

Dealing with dementia and and its attendant problems can be difficult on both the elderly individual and their caregiver.

It is imperative therefore, that caregivers are emotionally, physically, and intellectually ready for all of the various challenges that are associated with dementia caregiving.

elderly couple talking with the counselor
Photo by Picspree

Seeking support for Dementia Care

Getting help and support for Dementia is advised in order to help with coping with the attendant difficulties.

Individuals who are worried about their memory or someone else's, need to first visit a hospital and get a definitive diagnosis, after which they will be referred to a specialist team, a psychologist, or a specialist doctor.

In addition to specialist care, there are organisations which can provide information and support for any stage of dementia.

Elderly individuals who need help with their practical activities and their day-to-day care or benefits, can contact their local authority for expert advice regarding social care and other elderly care support services.

Taking care of someone with dementia can present many varied challenges and take a considerable toll on a caregiver’s health.

The good news is that there are emotional support groups which can provide the assistance and reassurance that you need to handle the stress and also take time for your own much-deserved care.

There are different types of support groups which provide different types of help:

Information about these groups are available online and Caregivers can make an informed choice based on their unique situations.

Providing Dementia Care can certainly be challenging and seeking elderly care in the form of home care, nursing home care, specialist care, as well as support groups is encouraged to help our senior lived ones live their lives as close to normal as possible.

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Rosemarie-Tamunday-Casanova

ROSEMARIE TAMUNDAY-CASANOVA, RN, BSN, MHAExecutive Administrator/Owner, RIGHT ACCORD Private Duty-Home Health Care

Rosemarie is a certified critical care registered nurse, has a degree in Legal Nurse Consulting and a Masters Degree in Health Administration. Rosemarie has extensive background in nursing from acute care, home care, nursing education and health care management and administration. Her longest career was a critical care nurse for Veterans HealthCare Administration. She is an approved Home Health Training Provider for Alzheimer’s Disease and Related Disorders (ADRD) by USF Training Academy on Aging.