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The Layperson’s Guide to Palliative Care for Our Loved Ones with Dementias and Alzheimer’s Disease

In the post “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed what home health care is, when it should and can be used, and what services it provides.

In this post, we will discuss what palliative health care is, when and why it should and can be used, and what services it provides at home for our loved ones with dementias and Alzheimer’s Disease.

Although, as any caregiver can tell you, dementias and Alzheimer’s Disease are always on the radar with our loved ones who have these neurological diseases, there are often other health-related and age-related illnesses that our loved ones are also dealing with, especially if they’re elderly.

Home health care services are available – and should be used – when there is an acute medical condition that needs to be monitored and resolved (if possible) after our loved ones are discharge from a medical facility. Examples of acute medical conditions can include hard-to-manage/uncontrollable blood pressure, diabetes, life-threatening cardiac events, pneumonia, embolisms, strokes, and joint replacements.

As soon as the acute medical condition no longer exists, home health care services are no longer available. However, most home health care agencies have an intermediate health care option between home health care and hospice (end-of-life, with very specific criteria, which we’ll discuss in the next post) care.

That intermediate option is palliative health care at home.

Palliative health care provides home health care services when someone has a serious long-term or terminal illness, but death is not imminent or the prognosis is longer than six months. 

Palliative health care provides life-prolonging and curative treatments – just as home health care does – as well as providing pain management and symptomatic relief.

palliative health care layperson's guidePalliative health care offers the same interdisciplinary team and services that home health care offers: nurses (visits are usually one a week), physical therapists, occupational therapists, speech therapists, home care aides to help with daily activities like bathing, if necessary, and 24/7 nursing/medical support.

Like home health care, this palliative health care team’s manager is the nurse who coordinates and collaborates with the primary care physician and other palliative health care staff.

Palliative health care is an excellent bridge that gives us and our loved ones time to find, consider, and agree on options for care without being rushed into making a decision without having all the facts, discussing and understanding them, and being ready to live (or die) with them.

The goals of palliative health care are different than home health care. With the knowledge that death is the eventual outcome, the emphasis of palliative health care is in the following areas:

  • Comfort and relief from physical symptoms like pain, nausea, fluid retention, and shortness of breath
  • Communication and coordination of issues, treatments, and needs among doctors (although at this point, I’d personally recommend – and this is what Mom and I agreed to – just working with a primary care physician), other palliative health care staff, our loved ones with dementias and Alzheimer’s Disease and us
  • Time to pursue treatment options, if wanted, and time to prepare for death (discussing death, ensuring that all “loose ends” are tied up, meeting personal goals, and saying goodbye)

Since most home health care agencies have a palliative health care program, the transition is easy – either we and our loved ones or the home health care nurse will ask the primary care physician to write an order – and seamless – the same team of nurses and therapists continues throughout the palliative health care phase of care.

Some palliative health care programs have social workers and clergy on staff to help with any community-based services that may be needed in the home and to offer bereavement counseling.

The palliative health care program that Mom was in did not have those services, but we were self-sufficient in terms of a social worker and we had enough spiritual support from our close-knit group of long-time friends within our church family.

Palliative health care should be, at some point, a part of the care we ensure is in place for our loved ones with dementias and Alzheimer’s Disease.

Most people don’t even realize this option is available – and our loved ones do not have to have been receiving home health care services to receive palliative care – and that is one of the reasons I wanted to explain what it is, what is does, and why it’s a crucial part of the team approach to care that we lead for our loved ones.

In the next post, and the last one in this series, we’ll discuss hospice care.

The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease

Part of the caregiving team we will lead for our loved ones with dementias and Alzheimer’s Disease will – and should – include home health care, palliative care, and hospice. It is, therefore, important to understand what each of these services provides and under what circumstances.

Home health care is generally provided – if it is not offered, then we should request it as part of the discharge process – after our loved ones are hospitalized for an acute serious illness that is causing systemic problems (strokes, heart disease, hard-to-manage blood pressure, embolisms, and continuously low oxygen saturation levels are some examples of acute serious illnesses) or surgery that requires follow-up monitoring and wound care. 

What services are included in home health care?

Nurses, who function as case managers, will come to the home from one to three times a week (depending on the severity of need) to do a thorough examination of our loved ones, provide wound care (if applicable), and serve as the liaison with both the primary care provider for status updates and medication changes (if needed) and with other services included in home health care.

I strongly advise, especially for our loved ones with dementias and Alzheimer’s Disease, to request that the same nurse – if he or she is a good fit – do all the home visits to ensure continuity and to create comfort and trust for our loved ones. If the nurse is not a good fit, then we should request a change. Generally, it will be obvious on the first visit.

Physical therapy, occupational therapy and speech therapy are also services offered by home health care. At the very least, I would suggest taking advantage of physical therapy and occupational therapy. For our loved ones who have suffered strokes and are recovering, speech therapy should be included as well.

Hospitalizations always leave our loved ones weaker physically than they were before being admitted, because with acute illnesses and surgeries, they usually spend a lot of time lying in bed and are not as physically active. In the case of strokes, motor skills are usually severely affected on one side of the body, although in some cases both sides are affected (depending on where the stroke originated in the brain).

Physical therapy will begin in the hospital in some cases, such as with strokes or joint replacements, but most hospitalizations will not include this as part of treatment.

Therefore, it’s vital to our loved ones’ health to use the physical therapy services provided by home health care to regain strength and to keep them as mobile as possible for as long as possible. In the case of strokes, it’s imperative to continue physical therapy as part of the recovery at home.

Physical therapists will visit the home, on average, twice a week and will help us and our loved one with exercises and activities to do on a daily basis to continue strengthening and improving balance, mobility and motor skills. They will also order any mobility equipment – if we don’t have it already – such as walkers and wheelchairs, if needed.

Occupational therapy helps identify what physical adaptions of the home need to be made to make daily activities easier and safer for our loved ones. These include things like grip bars near the toilet for ease of getting up (or a sturdy raised toilet seat with bars – my preference), grip bars in the shower or tub to prevent falls, and transfer seats for the tub to make getting in and out easier. They can also identify safety hazards – for example, throw rugs are very hazardous for elderly and those using walkers – in the home.

Additionally, occupational therapists can help our loved ones with functionally-appropriate ways to do everyday things. While our loved ones with dementias and Alzheimer’s Disease generally find their own unique adaptive ways with our help, occupational therapists are critical in the recovery or maintenance of people who have suffered strokes.

home-health-careSpeech therapy can be helpful for people who have suffered strokes. In the case of our loved ones with dementias and Alzheimer’s Disease, in general, speech therapy is not a viable option.

The nurse (case manager) will contact these therapists as warranted and set up the initial consultation appointments. Each therapist will then set up his or her own visitation schedule.

If additional assistance is needed with daily activities such as bathing, most home health care agencies have home health aides who will come at least twice a week to help with with those activities.

One of the best features of home health care is our access to 24/7 medical support. As anyone who has been a caregiver knows, the need for medical advice and/or assistance often occurs at night and on weekends. Without home health care, the only option is to take our loved ones to a hospital emergency room (nights) or an urgent care facility (on weekends).

Many of the medical issues that occur are easily treatable at home, so having to get our loved ones to a medical facility where they often have to wait for a considerable amount of time to be seen, treated and released is very stressful and hard on them.

With the 24/7 medical support of home health care, we can easily assist our loved ones at home without creating unnecessary stress and discomfort for them.

Home health care services are covered by health insurance (if under age 65) or, if 65 or older, by Medicare Part A (80%) and Part B Supplemental Insurance (20%) and should not incur any out-of-pocket costs for our loved ones with dementias and Alzheimer’s Disease.

We should be aware that most hospitals partner with a particular home health care agency in the area (most of the corporations that own hospitals have a home health care agency as a business unit in their corporate structure), but we should research – the best (and worst) referrals come from other people who’ve used an agency’s service – all the home health care agencies in the area we live in and choose the one that best suits the needs of our loved ones with dementias and Alzheimer’s Disease.

All home health care agencies are not created equal. Some provide excellent care and service and some do not.

When our loved ones are discharged from the hospital, a discharge coordinator will be involved and he or she will initiate our request for home health care (again, they will not always offer it, but we should always request it). If we don’t have a preference, he or she will use the home health care agency the hospital partners with. If we do have a preference, we should state that. Then he or she will contact that home health care agency to provide follow-up care in the home.

It’s important to be aware as well that we have the right to fire a home health care agency and, going through our loved ones’ primary care providers, get a referral to another home health care agency that we choose.

We should not and do not have to accept poor or inadequate care for our loved ones, nor do we have to accept a situation where the attitude of the staff is poor or indifferent and where the staff does not treat our loved ones with respect, kindness, dignity, and gentleness.

If the home health care agency providing care for our loved ones with dementias and Alzheimer’s Disease is not satisfactory, for whatever reason, then today is the day to make the change to another home health care agency. We owe our loved ones the best, the most professional, and the most respectful medical care available. Never settle for anything less than that.

In the next post, we’ll look at the option of palliative care and when it is used and what services it offers.