Financial Planning For Dementia – Part 2

Financial planning for dementia is one important aspect families tend to miss out on in the early stages. Experts tells us why it’s important to put a plan in place as early as you can.

“Care-giving came upon me gradually. When my mother’s health started deteriorating, it’s my father who took care of her. His sudden death meant that me and my brother had to share care-giving responsibilities. With everyone at home away on work, my brother needed to employ an attendant for half day. But we didn’t find the person reliable as my mother’s condition worsened, so I would travel 40 minutes one way everyday to look after her while my brother and his wife went to work. I did this for almost two years until my brother shifted to another city. Even now, I need to travel once in a while to help out. While we saved on the attendant’s cost, several costs did increase like the need for various aid products like a mobile toilet seat, absorbent sheets, diapers etc as my mother’s condition got weaker. We also needed to get physiotherapy done regularly for her. So overall the costs escalated much beyond our anticipation, including our personal costs such as cost of commute for me and cost of increased doctor visits, physiotherapy, increased hospitalisations, etc for my brother. There are hidden costs to care-giving that we do not anticipate at the beginning and it all adds up.” Sumeet Dhall, remote caregiver to her mother, 84.

“I changed my field from working for a magazine to joining corporate communications with a financial organization because I had to start earning more when my mother fell ill. I knew her illness was progressive and with both my parents growing older and limited income in the family, I had no option but to earn more. As my salary increased, so did my work responsibilities and an added cost was employing a caregiver throughout the day while I was at work or had to travel. Even then, I sometimes find it very hard to manage financially and I’m constantly worried what would happen if I lose my job. My saving potential isn’t much as the monthly care costs are very high given that my father also has health issues and I’m unable to cut down on certain necessities that are basic at this point.”

Sonia Parihar, caregiver to her mother, 77 years.

Sonia Parihar’s case is not a one off. While Parihar is lucky to have managed a higher source of income despite ongoing financial burdens, many caregivers find it hard to balance and retain work along with care-giving responsibilities. It may seem very matter of fact to discuss money when someone is diagnosed with Alzheimer’s Disease. But trying to take stock of finances and figuring out the best way forward is the smart thing to do, especially in the case of Alzheimer’s, which is a progressive disease where the person’s needs change over a period of time, resulting in an increase in costs, coupled with a possible shift in income levels or even loss of income in some cases. While we discuss about the increasing cases of Dementia in India and how to keep your mind active and alert, the discussion on its financial impact mostly takes a backseat. But it is startling when you see the facts.

What The Figures Say

The societal cost of dementia according to the ARDSI’s Dementia India Report 2010 was Rs. 147 billion. In 2010, when the report was published, there were 3.7 million Indians with Dementia. “Now the societal cost must proportionately have gone up, but without considering the cost escalation, and only taking into account the number of increasing people of 4.1 million (with Dementia) as of 2015, the societal cost is estimated at Rs. 163 billion,” Says R Narendhar, executive director, Alzheimer’s & Related Disorders Society of India.

What also adds to caregiver worries in India is that the government doesn’t have a medical care policy for people suffering from long-term illnesses like dementia. The Kerala government is an exception to this. “The Ministry of Health and Family Welfare does not consider Dementia as a health priority,” says Narendhar. “It is not part of any of its health schemes excepting skewed representation under mental health with no specificity. Dementia care must be considered at two levels. At the health ministry level, prevention (through awareness and research), diagnosis, treatment and care. It essential for the Government to run services for People living with Dementia. Whatever cost we may dwell about, they all relate to the population who can afford or manage to afford such costs (meaning that 2/3rd population). What about that 1/3rd population who may not be in a position to afford any of these envisaged costs? So services offered by Government is the only alternative for them, and that is why services from Government are required.”

What Should Caregivers Budget For

While budgeting for Dementia, the family members have to take into account all aspects. Some of these are:

1. Transportation costs: Trips to hospital are common and will vary depending on the patient’s mobility.

2. Cost of diagnosis tests

3. Cost of caregiver: This will depend on the nature of care provided. It could be part time care, daytime carer, a live in carer for 24 hours, etc. (Approximate cost of an eight-hourly attendant: Rs 10,000 to Rs 20,000 a month depending on level of expertise and area)

4. Cost of consumables such as medicines, diapers, disposable wet towels, cotton rolls, toiletries, among others. E.g., cost of a diaper ranges around Rs 2000/month

5. Costs of bigger accessories and home changes. These are usually one time costs and include remodeling toilets, including safety modifications at home, specialized beds, bedpans, commodes, wheel chairs, bathroom aids among others.

6. Dementia day care services if needed

7. Full time residential care services if needed.

8. Costs for physiotherapy and other associated care

Why You Can’t Put A Price To Everything

“Solitary care givers are the one who are worst affected. I know a couple who had two wonderful kids and the male member was diagnosed with early onset dementia, he had to forcefully leave his job due to losing his ability to work. Children were in their prime of their education and had recently shifted to places pursuing higher studies. Wife works with the election commission and cannot be at home caring for her husband, though she wants to. Here the point to be noted is the person affected himself has lost his livelihood, wife has been issued memos for being truant. Day care centre was a boon for her. But transportation cost was an additional burden, regular medicines, occasional visits to doctor all were not part of their planned budget or in consonance with her reduced income and increasing priorities of education of children, in the process she is also losing her quality of life due to the stress onslaught which cannot be quantized in monetary terms.”

–R Narendhar, ARDSI

Important Changes Caregivers Need To Factor In

Several factors may affect the finances of the caregiver or care-giving family directly or indirectly. As Swapna Kishore mentions in her presentation on ‘Under discussed challenges of Dementia Home Care in India’, presented at the recently concluded ARDSI National Conference in Kolkata on September 2017:

• Families may make many changes to take out time for care work. Such changes may reduce their income.

• Most Indian families cannot afford for a trained caregiver. So they give up their jobs or switch to part time jobs to do the care tasks.

• Even with a part time helper, family members may have to reduce outside work to manage care.

• Income (and maybe the job) is also lost during intense care periods and emergencies when caregivers have to take extended leave.

• When caregivers stop work for long periods, their ability to resume work later also goes down.

If you have ageing parents or want to safeguard yourself from financial setbacks in an older age, here’s what should go into a long term plan:

• Planning should be more for preventing health mishaps, than for impending costs. So, it is always good to invest for health care, in the form of health insurance, says R Narendhar. These days, there are smart policies which takes premium in monthly installments in EMIs. It is prudent for people in their 40s to opt for a minimum plan and move towards an optimal one when they reach 50.

• Figure out an income option where you can continue to earn some money even if you are home bound and busy as a caregiver. Sumeet Dhall works as a technical writer with a US based firm. She has intentionally taken on a remote working, home based role to accommodate care-giving even if it meant lesser pay.

• Ask your other siblings to share care-giving costs. Very often the financial burden falls on the person taking care as family living away from the situation is often unaware of the day to day expenses. Make sure other family members are clued in and that the mistrust between you and other family members is less. In case required, experts suggest bringing in a third-party adult, someone who is respected by all, to explain and give recommendations.

• Plan investments in a way that ensures liquidity when needed.

• Make a budget that factors in costs for long term care. Remember the hidden costs such as transportation and increased costs in other areas of life because of the ailment.

• Never leave financial planning until the end. Include it in your care plan and conversations around it right from the beginning.

(Ideas and suggestions from R Narendhar, executive director, ARDSI; Swapna Kishore, Dementia Resource Person and Dementia Care Notes; Sumeet Dhall & Sonia Parihar* (name changed on request) and other caregivers who have not been quoted here)