Written by Dr. Nathan Herrmann, Lewar Chair in Geriatric Psychiatry and Head of the Division of Geriatric Psychiatry at Sunnybrook Health Sciences Centre.
Question: Is this the right time to think about a nursing home for my husband with Alzheimer's disease?
Answer: Placement in long-term care is one of the more difficult decisions facing caregivers of patients with dementia. Let me start by stating that my personal bias is to try and keep my patients at home as long as possible, assuming that their safety and health, as well as the caregiver's health, is compatible with this goal.
What has changed?
I usually begin answering this question by first asking the caregiver why they have brought up this question at this particular time? What has changed for the patient in terms of their cognitive function, their abilities to participate in activities of daily living, their behaviour or their physical status? Or, what has changed for the caregiver, in terms of their physical and emotional health? The answers to these questions, and invariably, the balance between the patient's status, and the caregiver's ability to provide care, are what determine my answer to the question about the appropriate time to consider long-term care or "institutionalization."
For example, some patients may reach a point that they no longer recognize their home or their caregiver. While this can be extremely sad for the caregiver, it also allows them to consider long-term care, worrying less about their loved-one feeling the absence of their home and family.
Physical changes
Then there are the physical challenges to consider. Incontinence for example, is often a challenging problem for caregivers to deal with. Once a person with Alzheimer's disease is no longer able to walk, the home may not be compatible from a safety or practical perspective. Insomnia and night-time wandering are often difficult behaviours for caregivers to deal with, as well as agitation, aggression, and resistance to care.
Caregiver health
From the caregiver's perspective, their physical and emotional health must be excellent in order to deal with the physical and emotional demands of looking after people with Alzheimer's disease. For the physically frail caregiver with arthritis, who cannot lift or transfer a wheel-chair bound spouse, the time to consider long-term care might come earlier rather than later. Similarly, for the caregiver that is already feeling over-burdened and depressed, the ability to tolerate a patient who accuses them of stealing or being unfaithful may be the "straw that breaks the camel's back."
Solutions at home
With all these examples however, I always try to look for potential solutions at home first, before suggesting the need for long-term care. Can physical changes to the home be made to accommodate walking aids, wheel-chairs, or even moving the bedroom to the ground floor? Can regular toileting and incontinence products make incontinence easier to deal with? Can extra help be arranged through local care agencies or purchased privately? Would hiring a full-time professional caregiver be possible? Can behavioural management plans or even medications help with some of the difficult behaviours that are leading to caregiver stress? Does the caregiver require treatment for depression or anxiety? I am always fully aware of the barriers to implementing some of these suggestions, not the least of which, are the financial resources.
Once we have looked at all these factors, if the balance between patient needs and caregiver ability to meet these needs, cannot be re-balanced by some of the strategies mentioned above, I will tell the caregiver more definitely that this is an appropriate time to consider long-term care, and I will support them emotionally through the process.
Long-term care
Part of this support involves addressing myths about long-term care that lead to guilty feelings for caregivers. I often remind caregivers that long-term care can be helpful for many patients with dementia because the daily routine and structure of an institution provides a reassuring, predictable environment for the person with memory problems. Similarly, "on-site" activities and groups may improve stimulation and quality of life for the resident.
I also firmly attempt to de-bunk the myth that every patient who enters long-term care becomes depressed. While being placed in a nursing home might be difficult for many patients, many adapt surprisingly quickly and even "blossom" in the new environment. Finally, I frequently help them deal with the loss of their role as primary caregiver. Most nursing homes are happy to have family involved with the ongoing care of the person with dementia, though I usually ask my caregivers to allow the "heavy-lifting" to be done by the professional staff.
For 25 years, Dr. Nathan Herrmann has been a memory disorders specialist. He has done research in the fields of mental health in the aging, including dementia, Alzheimer's disease, depression, and suicide. Read his blog series: The Memory Doctor.
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