The journey of caring for a person with Alzheimer’s disease or other dementias is wrought with challenges, obstacles and heartaches. Although there have been advancements in the treatment of these diseases, there still is no cure on the horizon and, as we know, the final outcome is inevitable. It’s also very difficult for the family who is responsible for deciding on the care and environment appropriate for an Alzheimer’s patient.
After the diagnosis has been made, and the realization sets in that an Alzheimer’s patient needs care, how do you decide where the person should live or go for that care? Here are a few factors that determine that decision:
- At what stage of the disease is the patient?
- How many hours of care per day does the patient need?
- How much help with ADLs (Activities of Daily Living) does the patient need?
- What are the patient’s physical limitations?
- How many family members live with or near the patient, and how can they assist in caring?
- What financial resources are there for providing care and support?
There are many settings which are appropriate for dementia patients. This list is a summary of the obvious options, and each option has certain limitations and benefits. Often, however, as a person’s disease progresses, they may need to move from one setting to another. The single most important determining factor is the individual’s needs, or, “what is going to give the patient the best quality of life?”
HOME
| Disease Stage | Early stage |
| Hours of Care Needed | Minimal to many. The patient may need more companionship than anything. |
| Help with ADLs | May need little help, or may need a lot of help. Often needs help with direction only. Often the patient needs assistance in dressing or choosing appropriate clothing, grooming, toileting, and other ADLs. They may also be an elopement risk, and may need constant monitoring. |
| Patient’s Physical Limitations | A patient with early onset dementia may have few or no physical limitations. |
| Family Support | Often a patient in the home setting has a spouse or children available for care and companionship. The lack of this support may determine the need for another setting. |
| Financial Considerations | Living at home is often the least expensive option, unless there is a need for extensive home-care agency involvement. |
ADULT DAYCARE
| Disease Stage | Early stage. The patient often attends an adult daycare center to give them socialization opportunities and to provide daily respite to the home caregiver. |
| Hours of Care Needed | Constant at home. This option may provide 4 – 8 hours of care at a setting away from home, but requires constant involvement after returning home. |
| Help with ADLs | Usually, the daycare center accepts patients who can handle most of their own physical ADLs. It is also important to decide between a medical model or social model for an Adult Day Care center. Social models don’t have nursing staff. |
| Patient’s Physical Limitations | Adult Daycare Centers usually provide care to residents with minimal physical limitations. |
| Family Support | A patient who attends a daycare center may have a working spouse at home, or minimal other support at home. |
| Financial Considerations | This option is relatively inexpensive, as it does not involve 24-hour care. However, transportation to and from the day care center must be provided. |
ASSISTED LIVING
| Disease Stage | Early to mid-stage |
| Hours of Care Needed | 24/7 |
| Help with ADLs | May need help with ADLs, companionship, guidance, basic decision-making. This patient would not be safe living outside of a senior living community. The patient would need to self-administer medications with guidance from the staff. Nurses are not on site in Assisted Living communities, as they are non-medical. Even Alzheimer-specific communities don’t employ nurses on site. |
| Patient’s Physical Limitations | A patient may have limitations, but needs to be ambulatory, or able to propel themselves in a wheelchair in assisted living. |
| Family Support | This setting is helpful for a patient with little or no support at home. |
| Financial Considerations | Since care in this setting is 24/7, it is usually more expensive than being at home, or at home with day care. Usually, payment must be made by the individual or family, or occasionally by long-term care insurance. |
PERSONAL CARE
| Disease Stage | Mid-stage |
| Hours of Care Needed | 24/7 |
| Help with ADLs | May need help with ADLs, companionship, guidance, basic decision-making. This patient would not be safe living outside of a secure community. Often, nurses are on staff and can administer medications to the patient, and are available for other care needs. |
| Patient’s Physical Limitations | A patient may have limitations, but needs to be ambulatory, or able to propel themselves in a wheelchair in personal care (the same as in assisted living). |
| Family Support | This setting is helpful for a patient with little or no support at home. |
| Financial Considerations | Since care in this setting is 24/7, it is usually more expensive than being at home, or at home with day care. Usually, payment must be made by the individual or family, or occasionally by long-term care insurance. This option can be more expensive than Assisted Living due to the nursing component and other special programming. |
SKILLED NURSING
| Disease Stage | Mid-stage to Late-stage |
| Hours of Care Needed | 24/7 |
| Help with ADLs | Usually needs help with many ADLs and needs guidance throughout the day. Usually needs help with transferring, dressing, grooming, toileting, etc. |
| Patient’s Physical Limitations | A patient may have many physical limitations. They may not be able to walk or even propel themselves in a wheelchair. |
| Family Support | This setting is helpful for a patient with little or no support at home. |
| Financial Considerations | More expensive than Personal Care. Facilities are often Medicaid-certified. They often accept private insurance, and private fee-for-service as well. They may also be Medicare-certified for patients undergoing rehabilitation. |
SPECIALTY HOSPITALS
| Disease Stage | Mid-stage to Late-stage with behavioral needs. |
| Hours of Care Needed | 24/7 |
| Help with ADLs | Usually needs help with ADLs as in skilled nursing facilities. |
| Patient’s Physical Limitations | A patient may have many physical limitations. They may not be able to walk or even propel themselves in a wheelchair. |
| Family Support | This setting is helpful for a patient with little or no support at home. |
| Financial Considerations | More expensive than skilled nursing facilities. These hospitals are often Medicaid-certified. They often accept private insurance, and private pay fee-for-service as well. They may also be Medicare certified for patients undergoing rehabilitation. Stay at these specialty hospitals is normally short-term, with the patient often returning to another setting. |
Decisions regarding the proper types of care and setting for dementia patients should not be left to an individual if at all possible. Spouses, children, physicians, clergy, social workers, nurses, therapists, all have a unique perspective on the best care available for the individual patient. For the sake of the patient, and their family, develop a plan and be flexible, as the needs of the patient will change. For additional support, try your local chapter of the Alzheimer’s Association, or a local Alzheimer’s support group.
—Jerry Hoganson is president of Wesley Manor, a Continuing Care Retirement Community (CCRC) in Louisville, Ky.
