Dementia is a chronic, progressive and debilitating mental condition that affects the ability to think, remember and behave normally. It slowly affects a person’s cognitive skills such as memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement and eventually their mood and behavior too. To understand the signs, symptoms and course of dementia, let’s look at the case of Mr. H.
Mr. H is 52-year-old, and was working as a full-time accountant in a multinational company over the past 15 years. He never had any problem with respect to his job. However, he started making serious calculation mistakes from past five years that made him quit the job and began working as a manager in another company. With time the problem aggravated and his frequent forgetfulness, confusion, hampered him from fulfilling his duties, making him change jobs frequently. He was recently fired from his job due to the worsening of his condition in the last 6 months. He was having difficulty in walking, was unable to keep track of time and place to an extent that it became impossible to commute daily between his workplace and home. He also needed frequent reminder from us to maintain hygiene. His children and wife have been helping him with his daily routine. He would often become irritable and aggressive. The worse is he is unable to recognize his own children and wife.
We observe that as the disease progresses from early-stage to end-stage, dementia patients become highly dependent on their family to perform their daily activities, such as grooming, washing, bathing, dressing, and eating. It interferes with the ability to function independently and require high level of care.
Instinctively, family members and friends assume the role of a caregiver out of strong adherence to familial values and concern for near and dear ones. They provide practical help (financial support), personal care (assisting with eating, bathing, medicines etc) as well as emotional support (hope, reassurance, etc) to their loved ones having difficulties in performing daily life activities and needs. Care provided by family, close relatives, friends, and neighbours is referred to as informal care.
Research has shown that caring for a patient with dementia is a long-term commitment which is linked to both positive and negative outcomes for the family caregivers.
Negative Outcomes for Caregivers
A number of factors related to caregiving such as physically challenging, long-term care, severe behavioural problems and functional disabilities of dementia patient is likely to cause high level of psychological distress among caregivers. Other variables such as insufficient social support, finances and family conflict further complicate the outcomes for the caregivers. Family caregivers of dementia are often called invisible secondary patients. Some of the outcomes are discussed below:
- Higher levels of stress hormones
- Compromised immune response and antibodies
- Depression and Anxiety
- Feelings of social isolation, guilt and shame
Positive Outcomes for Caregivers
Few family caregivers report positive experiences from caregiving. They are:
- Enjoying togetherness in face of adversity.
- Elevated family cohesion and functionality.
- High spiritual and personal growth.
- Increased faith, meaning and purpose in one’s life.
- Feeling of accomplishments and mastery.
We agree to some extent that caring for a patient with dementia can be a rewarding experience. However, caregivers continuously attempt to balance caregiving with other activities, such as work, family, and leisure, may find it difficult to focus on the positive aspects of caregiving and often experience some of the negative reactions, such as an increased sense of burden. Further, depending on the level of care needed and other demands on the caregiver’s time and energy, it can also become an overwhelming responsibility. When this happens, it becomes essential to consider a formal care.
Formal care is provided by trained professionals or health care institute who are paid to give care. Formal care has proved to be effective in reducing the burden on family caregivers of dementia patients. It can be organized into three different categories:
Home-based care: It involves hiring a nurse or an attendant to help patients with personal care at home.
Community-based care: It involves day care centres which can benefit both the caregiver and people with dementia, by providing a much-needed break. It can be arranged for just an afternoon or for several days or weeks. It provides short-term relief to the primary caregivers and allows the patients to be social and participate in staffed activities such as music and exercise programs.
Residential care: It refers long-term care for patients with dementia who stay in a residential setting rather than in their own home or family home. They are usually equipped with providing medical, personal and social assistance to the patients.
It is not always possible to switch to formal care due to a number of reasons. Sometimes caregivers own dysfunctional thoughts can act as a barrier. These are rigid, stable, unrealistic beliefs towards caregiving. For example: ‘’I should do it all alone’’; ‘’No one can look after their relatives better than they do’’; or ‘’what people will say if they ask for formal help’’ etc. This can result in a number of negative physical and mental health outcomes for caregivers.
Apart from this, majority of people cannot afford the formal care resulting in increased burden. Thus, it becomes important to take care of oneself while extending it for your loved ones.
Some of the tips that can help family caregivers are as follows:
Accept your emotions
First and foremost, acknowledge the distress and emotions associated with caregiving rather than suppressing them. It could be both negative and positive. Vent out however you feel.
Ask for help
Don’t shy away from asking for help. Surround yourself with people who are supportive and appreciative. If things get tough, share your responsibilities and take a break.
Be Realistic
Set realistic expectations from your own self as a caregiver. There will be days when things might not go in the direction as you expected. Take it easy. Believe that you are doing your best.
Learn to say no
Begin to say no to requests that are draining, such as hosting Sunday dinners etc.
Join Support group
A support group gives you a chance to get things off your chest. It helps you realise you are not alone in this journey. Sometimes it helps you to connect with the right resources and helps you to cope with your own difficulties and emotions.
See a mental health professional for yourself
Sometimes, when things are too overwhelming, seeing a psychiatrist or a psychologist to understand your own emotional state can be a good idea. Let the expert decide how to get off that difficult emotion/behaviour so that the rest of the journey remains calm and smooth.
Caregiving for dementia is emotionally and physically draining. As a caregiver, things will be going to get tough at some stage. In those circumstances, remind yourself that you are a human before you became a caregiver. Don’t forget to treat yourself kindly.
Wishing you the best of mental health today and always!
Huda Naaz
Very informative article.a must for all doctors