What caregivers can do: Explain the situation clearly to the family and friends. Get as much support as possible. Be very careful planning for finances. Be ready for higher physical work and more emotional adjustment. Support children as they find it difficult to see a parent with dementia. Get counselling. Look for alternate ways to get comfort.
Some younger persons (below 65 years) also get dementia. The standard term for this now is younger onset dementia, or sometimes young-onset dementia. The other term used sometimes is “early onset dementia”, but this can be confusing because some people also use it for the first symptoms experienced with dementia at any age and this causes confusion. To care for a younger onset dementia person, in addition to the normal planning, you have to pay special attention to some topics. These are discussed here.
- Plan for reducing tasks and responsibilities of a person with younger-onset dementia.
- Gather information on important aspects of the person’s life.
- Take over investments and important matters in steps.
- Explain the situation to parents, siblings, and other relatives.
- Help the children of the family accept and adjust to the situation.
- Make an extra effort to retain friends and social circles.
- Plan the finances carefully.
- Prepare for the tough physical work involved caring for a younger onset dementia person.
- Prepare for much higher emotional impact.
- When looking at available facilities and support services, check if they can handle younger persons.
- See also….
(For general planning for dementia, see our previous page: Plan care for various stages of dementia)
Persons with young-onset dementia are leading active lives when they get dementia. For example, they may be managers, or professionals, like accountants, doctors, surgeons, and lawyers. They may have their own business. They may be the earning member of the family or they may be supporting the earning member. They handle several responsibilities and duties. But their work and their ability to meet their responsibilities are affected by dementia. They find it difficult to do their normal work as well as they did it before their dementia. Teachers may start finding it difficult to explain things to students. At office, these persons may not be able to complete their projects in time. Many start making serious mistakes.
You need to see how to help the person with dementia cut down the work and responsibilities depending on the reduced abilities.
Some countries have laws and systems under which such persons can continue work by switching to different roles. They can get disability or compassion allowances. India does not have such systems. Here employers usually do not make adjustments if an employee gets dementia. They do not tolerate mistakes or losses that may happen because of dementia. They may dismiss a person with dementia because the behavior is odd and could offend customers. Business partners may break off. You need to check what employers can offer in terms of disability benefits, job flexibility, or early retirement. You need to see how to help the person with dementia reduce work or sell off the business.
Find out more about the professional or social life or the person with dementia. Get an idea about the person’s friends and how to contact them. Find out the person’s social commitments to friends and relatives. If the person with dementia has taken on responsibilities but is now not able to meet them, this can cause misunderstandings. Try to prevent or reduce these. Locate some trusted friends and ask them to help you get this information.
Persons with dementia often make mistakes in investments because they no longer understand money transactions. People around may realize that the person with dementia is easy to cheat. They may make the person sign on power of attorney documents or property sale documents, or even taking away jewelry or cash. It is common to hear of persons with dementia giving away all their money to strangers or unknown charity organizations. Business partners may cheat the person out of the share. Because the person with dementia is active and has direct control of investments and property, the family may lose all its money and property.
Be very careful about cheating. Get involved in matters like investments, property, tax, etc. Locate important papers, and keep them safely. If the person with dementia does not understand or cooperate, get the support of family friends and respected seniors whom the person trusts.
These activities may be more difficult if you were not involved in such tasks earlier, and now have to do them as well as handle the workload and stress of caregiving.
It is common for close family members to be in denial about the dementia problem. Parents usually cannot accept that their child has dementia. They may even cut off contact. They may blame the spouse. This is common if the son gets dementia because in our society people often believe when the daughter-in-law is called bad. Parents may worry that the stigma will affect the marriage of the sisters and brothers of the person with dementia, and insist on hiding the diagnosis. Other relatives may also deny the diagnosis or blame you.
In some dementias, the persons with dementia do things that embarrass and hurt the feelings of their family. Usually, the person or family have no idea that these changes are because of a dementia disease. Such dementia changes can increase the family isolation if people do not get a diagnosis or believe a diagnosis. This also means you do not get the support of family and friends.
Find ways to make your family accept the diagnosis. Use authoritative literature and to ask counselors to explain things to other family members. This seems like additional work, but making the rest of the family accept the diagnosis is very helpful because then they may support you.
Children may be angry or embarrassed or in denial. They may feel insecure or resent the person with dementia. Often, children are students or just starting their career. An emotional disturbance can affect their future a lot. In India, because of the poor dementia awareness, children may not get support from friends. Even the family may not realize that the children need support, and just assume children are too busy in their own lives.
Plan how you will support the children accept and adjust. Discuss the situation simply and honestly with them. See if you can also explain things to school or college counselors and get their help. Schools and colleges in India may not have counselors who understand dementia. You may have to explain dementia to the counselor.
Most friends of the person with dementia are leading active lives. They are often too busy to remain connected after the person stops working. Even friends who want to stay connected may not understand what is happening or have enough time to stay in touch. Many friends feel very uncomfortable seeing someone of their own age changing so much and so they avoid the family completely.
Try to stay connected with least some important close friends. Explain the situation openly to them and ask them for support.
Financial problems are often one of the biggest stress in young onset cases. This is especially true in India, because India does not have good health care plans, disability allowance, or social security. If the person with dementia was the sole earner, your family now has no source of income. There may not be enough savings and wealth for all the expenses, including care, the childrens’ expenses, loan payments, future plans, and all that. You and other family members may need to start earning, but care work may not leave you enough time and energy for this. If you were doing a job, you may find it difficult to manage your work as well as the care tasks. You may have to switch to a lower paying job to get more time and flexibility. That typically adds to money problems. You may need help from relatives now or later, and so staying on good terms with relatives is necessary. Unfortunately, relatives may not help.
Look for ways to earn money while also caring for the person. Think of the skills you have and how you can use them to earn money given the time available to you. Contact friends and others who can help you see what you can do to get money. Look at your current savings and investments to see how to use them for better financial planning.
Persons with young-onset dementia are usually strong and in good health. If they resist help they can be very difficult to handle. Supporting them in a task also takes more energy because they are stronger. Typically, helping young onset dementia persons with tasks requires more physical strength and stamina than helping an older person. This is particularly true when the person with dementia is a man. It is even tougher if you are a parent looking after a child with dementia.
Consider how you will do the work and whether you need to employ someone to help. Learn better ways to give help with less physical effort. Get advice from physiotherapists.
Most people expect that some care will be needed for the elderly. But they are not emotionally ready for caring for someone in the 40s or 50s. The emotional support systems and counseling available for caregivers is poor.
If you are the spouse, you may be sad or angry that you have to give up so many things when you are still young and active. If you are the parent, it can be really heart-breaking to see your grown-up child deteriorate with dementia and become dependent on you. You also have to take care of own old age problems. If you are the child of the person with dementia, and in your teens or early twenties or thirties, you find yourself doing depressing care work while your friends are busy with studies or career or fun. Whatever type of caregiver you are, the emotional impact of care for a younger person can be very stressful.
Try to get counseling or find peace through spiritual activities, creative work, and other stress-relievers. Try to stay in touch with some important friends.
When looking at available facilities and support services, check if they can handle younger persons.
Most dementia care facilities are like old age homes with special knowledge of dementia. Younger persons do not fit into this atmosphere. Also, many younger persons with dementia have FTD and their main problems are related to behavior. Available facilities are not designed for handling strong young persons with difficult behavior.
When looking at dementia services and facilities, check if they can take care of someone younger and stronger. When hiring attendants, be alert on whether the attendant is strong enough for the physical work. If the person has behavior problems such as odd social behavior or disinhibition, check if the facility or attendant knows how to take care of it.
Resources/ References from Dementia Care Notes and related sites
To understand the stages of dementia and the impact on behavior, read: Stages of dementia and How Dementia Impacts Behavior. To understand how to plan care for dementia stages, read: Plan care for various stages of dementia
For a personal account by a daughter thrust in the role of a caregiver: Ekta Hattangady: Fifteen years old when her mother was diagnosed with Alzheimer’s
External links to pages that discuss younger onset dementia and planning/ important related issues:
- Finances can be a major problem in younger onset dementia. A two-part Indian article discussing financial problems that are faced and things that can be considered to protect from them is available at Financial Planning For Dementia – Part 1 Opens in new window and Financial Planning For Dementia – Part 2 Opens in new window .
- From Alzheimer’s Association, USA: Younger/Early Onset Alzheimer’s & Dementia Opens in new window
- From Alzheimer’s Australia: About Younger Onset Dementia Opens in new window
Understanding the impact of dementia on the person can be very useful while trying to see how to support them. Many persons with younger onset dementia have shared their experiences. Note that these are usually persons who receive the diagnosis when still in early stage and are able to share their stories of heir initial years with dementia, before their symptoms progress and start affecting them too much.
One good collection of videos by persons with dementia is available from Dementia Mentors Opens in new window . See the videos at the site or in the Vimeo album at Dementia Mentors Video ArchiveOpens in new window.
Here are some blogs by persons with dementia: Richard Taylor Opens in new window, Ken Clasper: Living well with Lewy Body Dementia Opens in new window, and Kate Swaffer Opens in new window.
Stories by persons with dementia are also available on various Alzheimer sites or can be seen in forums where they participate. News articles with personal stories are also available, and may be especially useful for FTD, such as When Illness Makes a Spouse a Stranger Opens in new window a detailed story of a person with FTD, and Inside The Mind Of Frontotemporal Degeneration: A Patient’s Story Opens in new window, which describes the experience of Howard Glick.
Some more blogs are:
- Kris, an early onset AD person shares thoughts and memories on her blog, Creating Memories Opens in new window
- Susan Parish, and early onset AD person: Susan Parish: My Journey with Alzheimer’s Opens in new window
- Christine Byrden, person with dementia, advocate, and author: Dementia From an Insider’s Perspective, Christine Bryden Opens in new window
- Joe (Joseph) Potocny’s chronicle of his journey with Alzheimer’s (includes link to his book): Living with Alzheimer’s Opens in new window.
Also, two links specifically talking of younger onset dementia where onset was detected in the early thirties. This is very rare, but such cases require even more preparation emotionally and otherwise. One is an account of a 34 year old woman who is getting ready for Younger Onset Familial Alzheimer’s because she expects to get it and has seen many close relatives get it: Alzheimer’s at age 34: Alabama mother of 3 prepares for worst Opens in new window. A quote:
She has seen her father die from the disease. And uncles. Her cousin. And while she watches as her older brother exhibit the signs of the disease, the 34-year-old single mother of three children knows her time is near.
Another relevant resources is a video from Australia, describing the case of a 31 year old woman diagnosed while pregnant. The video is available on youtube at:
Rebecca Doig is 31, Pregnant and has Alzheimer’s Opens in new window and can also be seen in the player below.
Books written by persons with younger onset dementia are also available. Some suggested readings are given here:
While I Still Can (Rick Phelps, Gary Joseph LeBlanc): Read about the changes that dementia have brought in the life of Rick Phelps, who was diagnosed with Early Onset Alzheimer’s. Includes experiences and quotes of other persons with dementia, and caregivers, and some tips they offer. For the paperback version, see Amazon.comOpens in new window, or, if you are in India, see Amazon.inOpens in new window or any other vendor.
Alzheimer’s from the Inside Out (Richard Taylor): Richard Taylor, a professor diagnosed with early onset Alzheimer’s, shares his experiences of having dementia. For the paperback version, see Amazon.comOpens in new window, or, if you are in India, see Amazon.inOpens in new window or FlipkartOpens in new window or any other vendor.
Me And My Alzheimers: Me and My Alzheimers, join me as fight the fight of my life against this awful illness (Volume 1) (Norman McNamara): Norman McNamara writes about his experiences of living with dementia, and provides valuable insights into what dementia is like on an everyday basis, and what the good and bad days are like. For the paperback version, see Amazon.comOpens in new window, or, if you are in India, see Amazon.inOpens in new window or any other vendor.
Page/ post last updated on: September 1, 2018