Alzheimer’s Disease Awareness Week: A caregiver’s role

Caregiving for an Alzheimer’s & dementia patient needs understanding, adaptability and patience. Swapna Kishore, writer, blogger and resource person for dementia care in India gives us a very detailed account.

Dementia is an umbrella term used for a group of symptoms related to loss of brain functioning such as memory loss, language problems, inability to understand or decide, disorientation, inability to coordinate movements, sequence events or take decisions, problems handling daily activities, problems handling emotions, dis-inhibition personality changes, mood changes, etc. Dementia symptoms can be caused by a number of medical problems related to the brain, most of which are irreversible and progressive diseases. Alzheimer’s Disease is the most common cause of dementia, but there are many other causes of dementia also. For example, vascular dementia accounts for 20-30% of dementia cases according to the Dementia India Report 2010. Other types include Dementia with Lewy Bodies, Frontotemporal dementia, Parkinsonian dementia, etc. Various types of dementia differ in which part of the brain is more affected, which symptoms are prominent, and how the dementia progresses.

Since most dementias are irreversible and progressive, these problems keep increasing with time. The patient’s personality changes and some behaviour are difficult to cope with. Over the years, most patients become immobile and fully dependent, especially in their final years. Caregiving for dementia patients requires time, energy, and money. To accommodate this responsibility, immediate family members often make major changes, such as leaving jobs, reducing other responsibilities, and giving up on socializing and other aspects.

When to consult a doc

Because dementia awareness is very poor in India, most people assume that the initial symptoms of dementia (such as mild memory loss, apathy, agitation, inability to learn new things, mood swings, personality changes) are part of ageing. In the initial stages, patients may notice their problems but, because they are scared that they will be considered crazy or stupid, they hide their problems and don’t consult doctors. Early diagnosis is therefore rare in India.

Families typically approach doctors after something goes drastically wrong, like a major episode of agitation or withdrawal, or when the patient wanders off and doesn’t know how to get back home, or forgets something very important.

Why diagnosis is important

Quite often, when people read an article on dementia and the symptoms seem to match those of the person they are concerned about they assume it is dementia and that nothing can be done. Such ‘self-diagnosis’ is wrong and harmful. A dementia diagnosis requires proper investigation and tests by a suitable specialist.

Approaching a General Physician (GP) may be a starting point for some persons. Unfortunately, as awareness of dementia is poor, its symptoms may be mistaken for old age, or for general problems of demoralized elders after retirement and many GPs may be dismissive of the symptoms. I even know of a case when the GP suggested marriage counselling for an elderly man instead of realizing that his changed behavior was because of dementia!

Neurologists, psychiatrists and gerontologists can be consulted by persons who suspect that someone has dementia. A good place to go to is the neurology/psychiatry department of a large hospital, or a gerontology department. These doctors would be able to advise families to appropriate facilities. Even amongst specialists, some doctors are better informed about diseases that cause dementia and have more experience about the range of the ways dementia impacts various patients. It is therefore advisable to look for specialists with experience in dementia. Memory clinics could be a good way to go. The local chapter of Alzheimer’s and Related Disorders Society of India (ARDSI) may also be able to suggest doctors who specialize in dementia.

A diagnosis equips the patient and family to understand what is going on and be prepared for it.

Often, the deterioration caused by dementia worries the patient and family and may cause arguments or despondence. For example, family members may keep scolding the patient for being lazy or uncooperative because they don’t know the person is facing genuine problems. This may distress the patient. Or the patient may get agitated or show personality changes that distress the family, who take it personally. Getting a proper diagnosis removes misunderstandings and hurt.

With a diagnosis on hand, families can plan for dementia care and adjust their other roles and responsibilities to accommodate this caregiver role. If the diagnosis happens at a stage when the patients understand it, they get time to plan what is important for them and to explain to their families the sort of care they want in the later stages.

Cure & Prevention

While in some cases, dementia symptoms are caused by problems that can be treated (like hypothyroidism, vitamin deficiency, infections), most dementias are caused by irreversible and progressive diseases (like Alzheimer’s Disease) for which a complete cure is not yet possible.

Research is going on for finding treatments that could reduce symptoms, reduce or stop progression, prevent, or cure the various types of dementias, with a lot of focus on Alzheimer’s Disease–the main (but not the only) cause of dementia. Updates are best obtained from authoritative sites like Alzheimer’s Association USA  and Alzheimer’s Disease International (these sites discuss all forms of dementia, not just Alzheimer’s Disease).

We must distinguish between prevention (doing something whereby someone will *not* get dementia) as against risk-reduction (reducing the probability of getting dementia). So even if we find a way to prevent one disease, there are still other diseases that could cause dementia. The focus, therefore, is on risk-reduction. For example, by keeping our blood pressure under control, we can reduce the risk of vascular dementia. In general, good health and nutrition practices and an active mental and social life are supposed to reduce dementia risk; up-to-date information is available at the authoritative sites mentioned earlier.

What a caregiver needs to understand

 For appropriate dementia care, family members must understand the impact of dementia on the patient and accordingly adjust their interactions with the patient. Let me take an example. Our culture teaches us that elders are wise and that we should follow their instructions and advice. But a parent who has dementia is facing problems even with small activities, and will obviously get stressed if expected to take on the burden of the “senior in the family” role atop existing dementia-related challenges. Such patients may take wrong or hurtful decisions, or neglect something important.

I’ve heard of situations where patients were cheated of their properties and bank balances by outsiders who noticed the person’s confusion and knew that the family had left the responsibility on the person.

Another example: out of respect and affection, we often tell the elders every event in detail. For a dementia patient, excessive, unnecessary data is a burden. They may feel diffident because they can’t handle our chatter. Or they may misinterpret it, or get agitated and say something hurtful.

We have to first understand the characteristics of dementia and then apply our love and respect to interact in appropriate ways.

We shouldn’t swing to the other extreme either. Some people treat patients as persons in a “second childhood” and say things like “my mother is my baby now”. This may stem from affection, but if it is accompanied with baby talk, that could be insulting; after all, they are adults facing an extremely tough situation and don’t like being patronized.

To interact with patients, the foundational caregiving skill is effective communication–understanding the patient, and helping them understand us. Tips include using simple, short sentences, speaking clearly and slowly, face-to-face and with eye contact, leaving time for the patient to absorb and respond, and so on. Additionally, caregivers must know effective ways to help patients with various daily activities. They need to know how to reduce/ manage challenging behaviour (like wandering, agitation, and repetition)

Families can also adjust the physical environment so that the patient remains safe and as independent as possible. They need to know about possible adaptations, such as improved lighting, removing things that could hurt or scare the patient (sharp objects, lose wires, dark pictures, etc.), and adding grab rails. (To read more on this click here)

A daily routine

Structuring the daily routine is another aspect of caregiving. A predictable routine gives the patient a sense of certainty and security, but should include pleasurable fun activities to improve the patient’s quality of life. What works best varies from patient to patient.

Understanding the medical aspects is also essential. Family caregivers have to coordinate the patient’s medical support for dementia and other ailments and emergencies. Patients often can’t tell when they are in pain or unwell, so this is a heavy responsibility. For late stage patients, caregivers must understand home nursing well enough to provide care or supervise hired helpers.

Do note that each of these is a topic in itself, and what I’ve said doesn’t even begin to skim what caregivers need to know. I have created online resources on these and other caregiving areas on my website, and interested persons can refer to the section for caregivers: Caring for Dementia patients

And of course, it’s not just learning the skills. They have to be applied all the time. Dementia care is an ongoing work and has been likened to a 36 hour day.

Dealing with caregiver stress

Caregiver stress is common…

Well-wishers and counsellors often advise caregivers to take care of their own health and stress levels, eat nutritious food, exercise, take breaks, remain active mentally and socially, take time out for their hobbies, meditate, and so on. These are essential, but caregivers often find it difficult to squeeze these into an already overwhelming day; they consider caring for themselves as yet another task to do (in addition to all that they are already doing).

Ideally, people around families with dementia can help caregivers take out time out to rest or relax.

One additional problem is that since caregivers are busy in the care-related work, they lose out on their own social circles and support. Many caregivers end up feeling isolated.

Caregiver services and support systems

Unfortunately, not much is available in India. Ideally, we should have services like agencies providing trained attendants, centres for day care and respite care, home health service providers, and so on. We should have training workshops for family caregivers, home visits by doctors and experts, phone helplines, online chats, caregiver support group meetings, and counsellors. We need these across the country. But these services and support are not available even in most state capitals.

So far, service providers have not jumped in to fill the demand. We can help caregivers by being there and accepting the situation without judgment. Many people are so uncomfortable with the way the patients change that they go in denial (pretending nothing is wrong) or blame the patient (she isn’t trying hard enough, she is negative, etc.) or family (they are cruel to her, they suppress her, they must be doing something wrong to her). Often, friends avoid the patient or the family because they find seeing dementia is depressing.

Just remaining available in a non-judgmental way makes sure the patient and family don’t feel isolated and misunderstood. Suggestions should only be offered after understanding the situation and gently so that they don’t sound critical.

Outsiders can also help by doing various required tasks, depending on their personality, time and energy. If they spend time with the patient, that gives caregivers a break. Or they can take the caregiver for an outing. Or do chores. Or help caregivers by locating information on various topics or resources. They can help take the patient for medical check-ups, and indicate availability for emergencies. They can take the kids of the family for outings or tuitions or exams or help them with homework and projects.

Though dementia care is strenuous work without any break, caregivers may not ask for help because they don’t want to impose on others, or they feel that asking for help is like admitting failure in fulfilling their duty. But if friends, colleagues and relatives offer help sincerely without judgment or criticism, caregivers may accept.

My journey with my mother

I saw my late mother through all the phases of dementia–early, middle, and late stage. In the beginning, we didn’t know she had dementia; she would hide her problems or blame me, and I had no idea she was suffering and I’d get hurt or angry. Though we consulted neurologists very early in her dementia because of some other problems, we got a formal diagnosis only after multiple consultations.

Over time, our family found its rhythm and balance, and this required truly understanding her situation and adjusting everything around it. It required making major changes in my life to a point where caregiving became my main identity and role. I count myself fortunate that she seemed at peace and happy in her last few years even though she was totally dependent. I have been sharing my caregiver journey (joys, mistakes, challenges) in detail on my blog http://swapnawrites.wordpress.com.

One tricky but essential aspect is to find a caregiving pace we can sustain. Doing so much that we burn out does not help, because then we will break down and give up, and who will do the caregiving after that? But doing too little can result in problems, hurt, and even tremendous guilt later. So it is a balance, and each of us has to find one’s own level of caregiving and their pace; there is no one-size-fits-all. Then there’s this aspect of role and identity. Caregiving for dementia is a full-fledged role that extends across years. It is tough, high-responsibility work that consumes time and energy akin to a career, and needs the same seriousness. So learning skills, finding resources, connecting to others, planning for time and money, taking enough breaks to recharge, all are important.

Finally I’d say that while caregiving may seem all-consuming for years, it is better if it is not our sole form of identity because then, when it ends (as it must someday), what remains? Some of us may become fulltime caregivers, but we are also persons with other interests and needs, and even in caregiving we are applying creativity and flexibility. If we do not value ourselves, why would others?

© 2012 Swapna Kishore