Skip to main content
Submitted by PatientsEngage on 6 January 2017

Amrita Patil Pimpale, Dementia Care Consultant, lists out 5 things you can do to help your spouse/partner who has been recently diagnosed with dementia.

Most people with dementia undergo behavioral changes during the course of the disease. They gradually lose their mental faculties and become confused and vulnerable. They tend to forget things that have happened quite recently, but may seem to have clear memory of things that happened a long time ago. They will experience mood changes, can appear to be anxious, often agitated with small issues. This can be difficult, stressful for the caregiver, especially if the person is your spouse. However, diagnosis of dementia does not imply that person has to stop doing activities that they enjoy. With appropriate care and support person with dementia and their spouse can continue to live a quality life.

1. Accept the diagnosis

When your spouse has been diagnosed with a condition that has no cure and is progressive, it is natural that you might be experiencing range of emotions like guilt, grief and loss, even anger.

However, you can lower your stress if you and your family continue to live lives of acceptance, creativity instead of trying to fix the problem or meet impossible expectations. This is the first step for providing good care for your loved one living with dementia. Accept the diagnosis, understand the disease, and learn tips and techniques to work effectively with your spouse who is living with dementia. You can take help and guidance of dementia care books, psychologist, dementia care counsellors who can prepare you better for the upcoming caregiving journey.

You will be playing an important role as a carer for your spouse who may perceive his/her circumstances differently due to memory impairment. Their reality, at times, will not be of present but of past. They may ask for her deceased parents, may struggle to remember important events like retirement, son/daughter’s wedding etc. When you are prepared to deal with situations like this, you can provide empathetic care that can provide your spouse support to deal with their symptoms of dementia.

2. Include the person with dementia in decisions

Do involve your partner as much as possible in decision processes that affect them like buying anything for your partner, deciding on daily routine activities etc. It will persuade him/her to accept and use procedures, devices and make choices that would help them.

However, your spouse may find it confusing to handle bank work or other complex tasks. Here, you will need to help manage many routine errands. Since dementia involves impaired judgement and communication, it is crucial that Person with dementia is provided safe and positive environment to live. Cooking or driving without supervision or going out alone is best avoided for safety of the person with dementia.

3. Key is to have a daily routine

Set up a routine for your spouse that incorporates balanced physical activities like exercise and walking. Besides, regular contact with family and friends, you may however want to avoid going in crowded places as your spouse may prefer to have one to one social contact compared to group conversations. If dementia care professional home visits are available in your area, you may opt for them as they provide stimulating activities, much needed social contact which is proven to reduce anxiety, agitation in people with dementia. It is important that you encourage your spouse to maintain his independence. This can be achieved by letting him/her involve in housework, outings, any hobby of their choice.

4. Set up a support system for yourself

Decide early on how you wish to be involved in the care of your partner. Would you be taking help from professional carers and what kind of help would you require from your family and friends? Think about your own health, other responsibilities while setting up care support system for your spouse.

The caregiver journey is rewarding but at the same time painful, exhausting, and long. You may experience ongoing sadness and grief. But, for the sake of your and your partner’s health, seeking support is perfectly alright. Find a support group in your area that will offer you platform to discuss caregiving issues, receive support, guidance from fellow caregivers who are in similar situations.

Alzheimer’s society’s Talking point is an international online community of caregivers, alternately join our Alzheimer's and Dementia community or our Caregiver community

5. Look after yourself

It is difficult caring for someone when you don’t feel in good shape yourself, emotionally or physically. You may worry about the person you are caring for or that you are losing control of your life as you increasingly react to external demands placed on you. Try to resolve whatever is causing you to worry, only then can you think positively and productively.

Learn simple ways to calm your mind and body, regular periods of relaxation are essential. This can be achieved by regular social contact with family and friends. Short vacations, movie outings, daytrips could offer you much needed calm and relaxation.

Other than this, I would highly recommend learning quick relaxation techniques, like meditation, breathing exercise, incorporating positive thoughts that can influence your behaviour and will allow you to be more in control of yourself eg “I feel at peace”, “I am content”, ”I am in control of my feelings”.

(Amrita Patil Pimpale, Dementia Care Consultant, is the Founder, Lead Consultant of Echoing Healthy Ageing, a social enterprise working in Dementia care sector, focusing on home based therapies, counselling, dementia care training for family carers and professional in Mumbai. Previously Project Manager of care home improvement project in England. Certified Trainer of Person centred dementia care from University of Bradford, UK; Dementia care mapping advance practitioner and Best practices dementia care from University of Stirling, Scotland. Designed, delivered training for care staff (dementia care), NHS nurses in England and has internationally published research papers in dementia care.
 

Condition

Stories

  • Types of Dementia
    Different types of Dementia • Alzheimer’s disease: This is the most common type of dementia and is marked by protein deposits in the brain and nerve cell damage.  • Vascular (or blood vessel) dementia: This is a type of dementia that is caused by disease or injury to blood vessels in the brain. • Lewy body dementia (DLB): This is a dementia that has the primary symptoms of visual hallucinations. • Frontotemporal dementia (FTD): This is a dementia that is characterised by drastic…
  • Dementia Tests and Diagnosis
    What tests do you need to do to assess if a person has Dementia: Mini mental state examination (MMSE): This is a brief 30-point questionnaire test. It takes about 10 minutes and examines functions including arithmetic, memory and orientation.  Abbreviated mental test score (AMTS): This was introduced in 1972 to rapidly assess elderly patients for the possibility of dementia.  Modified Mini-Mental State Examination (3MS) Cognitive Abilities Screening Instrument (CASI) Informant…
  • Dementia Symptoms and Signs
    The most common symptoms of Dementia are: • Memory loss, especially of more recent events  • Hallucinations and delusions • Confusion • Balance problems • Loss of bladder or bowel control • Sleep disturbances, including insomnia and acting out dreams — physically moving limbs, sleep talking, screaming, hitting or even getting up and engaging in daytime activities. • Difficulty finding their way around, especially in new or unfamiliar surroundings  • Problems finding the correct words…
  • Dementia Causes and Risk factors
    What causes Dementia The most common cause is Alzheimer's disease, which accounts for up to 60% of all cases. Alzheimer's disease is caused by the destruction of certain brain cells leading to the loss of the neurotransmitter acetylcholine. Vascular dementia, which occurs after a stroke, is the second most common dementia type. But there are many other conditions that can cause symptoms of dementia, such as thyroid problems and vitamin B complex deficiencies. Dementia can also be caused by…
  • 10 Tips on Communicating with a Patient with Dementia
    Ekta Hattangady became her mother’s primary caregiver when she was 13. Her mother had Early Onset Alzheimer’s at age 43. Hindsight is always 20-20. I was an Alzheimer’s caregiver between 18-15 years ago. The world was a different place then. The internet was not as big as it is today and nor was Alzheimer’s a household name. Not in India, anyway. As time has passed, my work with families and people with dementia has increased and my level of knowledge about the disease has grown…
  • Profile pic of Swapna and text understand how dementia is affecting your loved one
    Understand How Dementia Is Affecting Your Loved One
    Swapna Kishore was a caregiver for her mother for many years. She has created many online resources for dementia caregivers in India, including an English website, Dementia Care Notes and its Hindi version Dementia Hindi. Here, she answers some questions by PatientsEngage.  Please tell us about your mother's early dementia symptoms and how her condition progressed. My mother's early symptoms included mild disorientation, memory problems, and repeating herself…
  • Alzheimer’s – a most wretched disease
    Balbir Singh Rawat, now 87, looked after his wife who had Alzheimer’s Disease. He talks of the challenges, learnings and what we, as a society, need to do to tackle this scourge of the elderly. My wife’s troubles started sometime in 2005 when she was hardly 70 yrs old, the prime age of a grandma. The disease crept in so slowly that none noticed the subtle changes in her behaviour by way of reactions to external stimuli.  When we did notice, it was too late to avail of any chance of…
  • Alzheimer’s Disease
    What is Alzheimer's disease? Alzheimer's disease is a neurological disorder (disorder of the nervous system) in which the death of brain cells causes memory loss and cognitive decline. The disease starts mild and gets progressively worse. Mostly, it’s the neurons (nerve cells) that are destroyed in Alzheimer’s disease. Our thoughts and memories move through nerve cells as electrical charge. Alzheimer’s disease disrupts electrical charges within the cell and also the activity of…
  • Alzheimer's Stages and Complications
    What are the stages of Alzheimer’s disease? The disease progresses differently in different individuals, but the following offers a rough guide to the various stages: Stage 1 – Mild/Early (lasts 2-4 yrs)  This stage may be marked by frequent memory loss, particularly of recent conversations and events. The person may repeat the same questions and show some difficulty in understanding conversation. Mild coordination problems, like writing and using objects. Depression and apathy can occur,…
  • Management of Alzheimer’s Disease
    How can you keep the patient well: Creating a safe and supportive environment: You may need to modify the home depending on the needs of the patient. This may include locking doors (if the patient is prone to wandering), installing gates in front of stairs to prevent falls, removing rugs or other objects that one could trip over, use of bright lighting or labelling the kitchen or the bathroom to reduce confusion for the patient.  Regular exercise: This has known benefits for heart health…