Tips for the ethical dilemma and stress faced by a dementia caregiver
World Human Rights Day is observed on December 15th every year. A Dementia patient too has his or her rights as defined by the Alzheimer’s Society of UK here .
In this context as a part of Samvedna Senior Care’s Dementia Support Group meeting on Saturday, 9th December 2017, we decided to discuss the ethical dilemmas faced by families for their loved ones with Dementia. We started the workshop by discussing some viewpoints on dilemmas that commonly disturb caregivers.
Ethics in Dementia Care
As a spouse or child, it can be difficult to take over the role of a caregiver for someone whom you may have looked up to for advice and support in the past. It can also be difficult to decide how much control to take and when to do so. When should you be the strict parent to your loved one? When should you refrain from taking over and allow the person independence? Given below are some of the dilemmas discussed during our support group meeting.
Ethics demand that we should inform a person of their Dementia diagnosis. The person who actually has the disease deserves to know the truth and they will need time to process the diagnosis and cope with it.
Knowing in time gives the elderly the benefit of being able to plan and live life to their fullest potential. However, it is important the news is given as sensitively as possible and in a manner and language that they can understand.
The exception in telling the person about their diagnosis is when their dementia has reached a phase where they can no longer process the information easily. In such a situation, they may not be able to retain the information long enough to understand it.
Giving medication for difficult behaviour
In many situations, where a person with dementia is displaying behaviour that can be harmful to themselves or others, medications such as antipsychotics are required. However, as caregivers, we should assess how severe the behaviour is and how negative the consequence of the behaviour can be before deciding on the need for medication. It is important to differentiate between irritating and harmful behaviour.
We can also try alternative ways to control behaviour before initiating medication. It helps to try to identify and remove triggers for the behaviour. This is important because medication may remove the difficult behaviour, but overall it may not have positive effects on the elderly. Even when medication is initiated, it should be viewed as a short term intervention and its need should be re-evaluated from time to time.
Many people assume that a dementia diagnosis means that it is not safe for the person to drive anymore. That is not true. A dementia diagnosis by itself is not a sufficient reason to stop driving. Persons with dementia can and do drive till they are capabilities permit. Eventually a time will come for them when driving will not be safe. It is important to plan ahead for that time and make suitable arrangements.
Driving will have to be withheld when it’s risky for them or others. If it is hard for you to get them to stop, you can ask the doctor to tell them orally or in written. You may also have to take away their keys, remove the car, change the lock, etc. to keep them safe.
Autonomy in decision making
A person with dementia can continue to take decisions about their life. They also have the moral and legal right to do so. Whether it concerns deciding on a course of treatment or a doctor, or where to live, their will, etc., they have the complete right to decide.
As their dementia makes this difficult at times, you may need to help them by providing all relevant information. You can use simply, easy to understand language, give options and the time to process it all. This will help them retain their autonomy for longer.
A time does come when their cognitive functioning deteriorates to a point when they cannot make their own decision. You may try to explain the situation to them, but they may not be able to understand. They may not retain enough information to make safe and well –informed decisions. As such a time, you will have to take over, but you should try to consider the wishes of the person as you knew them.
End of life care
When a diagnosis of dementia is given early enough, it becomes possible to discuss the elderly’s choice of treatment, and their decisions surrounding end of life care. You may encourage them to share in the form of written directives. Your best effort should be to follow through with their wishes.
Another challenge is to have the conversation that would enable you to have the information you need. It may be difficult to get started, but it is an important conversation to have.
A cathartic experience
The new members of our support group got the opportunity to share with our older members who are a group of non-judgemental, supportive and compassionate individuals. Just the act of sharing is known to help us let go of most of our stress.
“He is just a shadow of what he used to be”. A young daughter shared her panic on multiple occasions when her 65 year old father left the house and walked down to familiar places while she frantically called person to person. She spoke of her difficulty in communicating with him and the sadness felt by his lack of response due to his aphasia.
“It breaks my heart when he apologizes” shared another daughter who has been trying to get her father to lead a more active and social life. Seeing him withdraw into a shell has been very disheartening for her. Her dedication to her father pushed him to take the step to leave her job so that she can spend more time with him.
Dr. Satish Chawla, MD, FACP, AIIMS, helped answer a lot of questions regarding when the need for medication becomes pertinent. He also clarified doubts related to the need for antidepressants and their interaction with drugs that treat dementia. He also stressed the importance of getting an accurate diagnosis with tests like MRI and CT Scans.
We concluded the session with a fun filled movement activity called Clap Transfer. The entire group enjoyed and participated enthusiastically. Everyone left feeling refreshed and de-stressed.
We at Samvedna Senior Care aim to help seniors live happy, active and independent lives, in the comfort of their home and community through interactive caregiving.
Samvedna Senior Care was established in October 2013 with two complementary goals – firstly to provide quality home care services to seniors with limited mobility or dementia and hence social interaction, and secondly to facilitate stimulating community interaction and participation.
Our Dementia Care services are –
At-home services –
Dementia intervention activities by trained Care Specialists (already mentioned above). These services are available in Delhi NCR
More – http://www.samvednacare.com/
Please call us for more info – Delhi NCR – 98184 21446, 124 4229659
Dementia Support Group –
Our Dementia Support group in Delhi NCR is a platform for caregivers to share feelings and support each other.
More – http://www.samvednacare.org/our-work/dementia-care
Please call us for more info – Delhi NCR – 98184 21446, 124 4229659
Cognitive Wellness Programme, Sector 57 Gurgaon –
Samvedna’s Cognitive Wellness Programme is designed for seniors with mild cognitive impairment, early dementia or Parkinson’s, and elderly lacking in enthusiasm and motivation. The aim is to stimulate the mind of the elderly to slow the progression of the disease or impairment. The sessions are 3 days a week, 11AM-1PM.
More – http://www.samvednacare.org/our-work/cognitive-wellness-programme
With our General Well Being Services we aim to raise the quality of life of seniors, specially those who may have limited mobility and social interaction due to various constraints. Our interactive programme keeps them active and engaged through physical, mental and social activities, all in the comfort of their home.